Guide to Pudendal Neuralgia and PNE from Ava


The Core Group would like to extend its gratitude to Ava for writing this in-depth analysis which covers a broad spectrum of topics related to Pudenal Neuralgia and PNE.  Our membership will find this document to be a great asset as they attempt to sort out many of the nuances of this baffling medical problem.

We would like to point out that all of the posts on this forum are for informational purposes only and the information contained in this “Guide to Pudendal Neuralgia and PNE from Ava” has come directly from Ava and not from The Core Group.

As always, we advise our members to rely on the advice of their doctors before making any decisions regarding information they have gleaned from any website.

Once again, we would like to express our deepest thanks to Ava for the time and the solid research that she has put into preparing this document and for sharing all of her ideas with us, both on the forum and in this document.

The Core Group

 

 

Table of Contents

 

I.          On the TIPNA forum

                        A. The application of logic to PNE issues

                        B. On opinions given on the forum

                        C. Assisting others by sharing information

II.         On PNE

                        A. Mechanisms of nerve injury

                        B. Path of the pudendal nerve and sites of possible entrapment

III.       On  pudendal neuralgia following vaginal or abdominal hysterectomy

IV.       On reasons for failed pudendal decompression surgery

V.        On diagnostic testing

                        A. Practical guide

                        B. PNMLT

                                    1. neurophysiology

                                    2. analogy

                                    3. sensitivity and specificity

                                    4. validity of intra-operative and post-operative PNMLT

                                    5. reasons for PNMLT despite concerns over validity

                                    5. Botox and the PNMLT

                                    6. nerve testing of the penis

                        C. MR neurography

                        D. Nerve blocks

                        E. Botox (diagnostic)

VI.       On the processes involved in pain

                        A. The mechanism of central sensitization

                        B. Activation of opiate receptors following surgical event

                        C. Nociceptive versus neuropathic pain

                        D. The four horsemen of pain

VII.      On pharmaceuticals

                        A. Valium and other benzodiazepams

                        B. Indocid suppositories and NSAIDs

                        C. Narcotic analgesics

                        D. Neurontin

                        E.  Cymbalta

                        F.  AV411

                        G.   PARP-1

                        H.  minocin

                        I.   Quinamm

                        J.   Tylenol

                        K.  Effectiveness of current medications for neuropathic pain

                        L.  On the pharmaceutical industry

                       

VIII.     On the use of medications in combination to address neuropathic pain

IX.       On acupuncture

X.        On spinal cord stimulators

XI.       On lumbar disc herniation

XII.      On MRI, CT and discography for lumbar disc diagnosis

XIII.     On alternative medicine

XIV.    On prolotherapy and SIJD

XV.      On a proposal to evaluate responses to neuropathic analgesics

 

 

I. On the TIPNA forum

 

          A. The application of logic to PNE issues

 

Several have written that it is difficult for the non-science trained individual to understand the basis for some of these arguments. Yet in order for us to apply logic to PNE, it is important that the process begins. Otherwise it is like the Japanese film Rashomon, where the same event is viewed from diametrically different positions, thus the interpretations from the varying position is wildly disparate. So I would like for those who want not only to understand but to participate to begin with the anatomy of the nerve. Take your hand and palpate your sacrum. Imagine the sacral plexus originating from the cord, forming on the other side of the bone you are touching. Imagine the nerve as it courses along the inside of the gluteus maximum muscle...feel the muscle, imagine the course of the nerve. Trace the course of the nerve a little further each day, rehearsing three or four times what you know. There are many books and drawings to guide you, but none more powerful than your own imagination of the nerve in your own body. In 30 days or less you will know the nerve and all adjacent anatomical structures, and you will find confidence in this knowledge. Not only that, you will have begun to penetrate the layers and layers of mundane that science requires in order to begin a pursuit of the profound. While the value of this forum is already immeasurable, suppose we were to link in series the processing capabilities of all 780 or so minds, these being all well informed, and then perhaps produce the single original thought that would turn the tide. Yes, we have talked about the paucity of diagnostic modalities and their limitations, and the doubts that arise because such modalities are used in a way that conflicts with science, but I believe we can do better than that. It is important to realize that the law of diminishing returns applies to doubts as well.

We have talked about the frailties of the PNMLT, the neuropathological basis for those frailties, and the fact that a post op or intra-operative PNMLT cannot be valid. But what would be the solution... those are the questions we should be debating. Since the degeneration regeneration process compromises velocity and latency in post release testing, what means, theoretical or otherwise, might be devised. In terms of nerve testing, the one which gave the most desirable clinical information would be that test which measured what the dendrite was saying to the cord. Is the cord being told that pain is present or not? We can now measure the quantity, osmolality, osmolarity, and particulate size of a liquid passing through a tube without actually sampling the tube. Is it possible to do the same in terms of measuring impulse propagation along the axon? Or perhaps we can find greater reliability in measuring velocity and latency
in unmyelinated axons in the pudendal nerve. This has not been discussed for obvious reasons, but the pudendal nerve, like all peripheral nerves, has axons that are mylenated to different degrees as well as axons that have not been myelinated at all. Again, since the thicker, heavier myelinated axons are what transmit the impulse quickest, they are the axons carrying the impulse that is measured in the PNMLT. When damaged, they transmit slower. Neuropathy shows us why, and that these changes persist. But suppose we were able to subject the pudendal nerve to a test of unmyelinated axons only, or if we devise an impulse that would not transmit in the myelin sheath but instead be transmitted in the same manner that unmyelinated axons transmit.

If we look at the mechanics of entrapment, then apply the same physics to the cellular level, one sees why injury occurs initially to the sheath of myelinated axons within the nerve. A force applied to a structure of many consistencies will first affect those parts of the structure that provide the least resistance, unless the architecture of the structure is designed to diffuse such as force. It was never necessary for such an architectural modification in peripheral nerves...protection came from location and outside structures... the nerve never had to evolve a mechanism to protect itself from compression.

This gives rise to the possibility of another means of testing for PNE, one that would give correct data (excluding the uncertainty principle) either pre-op or post-op as to persistent entrapment.... peripheral nerve impedance testing. In the time before telephones were owned by customers, but were instead rented from the phone company, electrical tests were developed to monitor if phones had been added illegally to your service. The phone company would dial your number and measure impedance on your line. One phone ringing gave a certain impedance, 2 phones another level, 3 phones more, and so on. If you were paying for 2 phones, but impedance testing revealed three, then your bill would be adjusted. Customers could defeat impedance testing by clipping the wires to the ringer, but most did not have that savvy. If equipment of exquisite sensitivity could be developed, we would not have to apply a stimulus to the rectum. Instead we would measure the response of the nerve to a carefully measured stimulus applied proximally. If the nerve was firing above baseline (there would always be some level of activity, but this could be quantified and standardized in animal and human models), this would suggest entrapment. It is possible that if the sensitivity of the readings was great, the degree of impedance could correlate in a linear or sigmoid fashion, again carefully quantified, with degree of entrapment. Impedance would not be a measure of velocity or latency and therefore unaffected by the state of the myelin sheath. A person still symptomatic but with baseline impedance would not have persistent PNE, but rather the pain would have to come from either the cord or cortex level. A post release but still symptomatic patient whose impedance was elevated into the levels associated with entrapment could have persistent PNE, but then again, other sources of stimuli to the nerve (other pathological processes) would have to be ruled out.

But we should never be satisfied with nerve testing alone, even if we reach the point where velocity, latency and impedance could be measured with a high degree of sensitivity and specificity, and that correlation to entrapment was impeachable. We need to be able to see the nerve in much the same manner that a cardiologist can visualize the coronary anatomy via catheterization. We are not far from the point that magnetic resonance imaging could measure the configuration of the pudendal nerve at each millimeter along its path. Then in most cases of true PNE the exact anatomical location of entrapment could be pinpointed. At present this is more a software problem than a hardware one. In my opinion Bill and Melinda Gates are an extraordinary couple, and I certainly do not wish PNE upon them. But I am willing to bet my husband's every last nickel that if one or the other of them had developed PNE a year or so ago, reliable nerve testing would now be available to us, and software would have been developed that allowed precise visualization of the pudendal and other nerves. Such diagnostic modalities might seem far-fetched to our doubters , but these modalities are far more realistic than an MRI scan or lithotripsy was two decades ago.

But while we can look to the future, we live in the present, and many patients with PNE still have pain. Again, I contend that if one can be cured, something has to be responsible for dismal results in those still suffering. Do we simply accept these treatment failures as a part of doing business, or do we figure out why they happened and what can be done, both to prevent future failures and to give relief to those who live with that failure every day. To do so we have to look at what we are doing and the basis for doing it. Take diagnostic blocks for instance. When your phone goes out of service and a repairman is summoned, he does not check the cable closest to the central office first. He goes to the protector outside your home, and checks to see if there is a dial tone. If not, he goes to the pedestal where the drop to your house connects to the residential cable, and then works his way back to the switching equipment.


If there is a dial tone at the pedestal, then the problem is in the wire overhead or buried underground to your individual dwelling. You may be tempted to argue that when an electrician comes to your house to check out a faulty outlet, he first goes to the electrical panel. There are both therapeutic and diagnostic implications for this exception. First, the electrician does not wish to be electrocuted, so he turns off power to the outlet before repair. Second, he does not trace the pathway of power in a logical sense, at least not initially, because he does not have to go back to his truck, drive three miles, climb a pole and sort through hundreds of cable pairs to find yours in order to do so. To the telephone repairman it is much more efficient, time and energy wise, to apply logic to the problem presented than it is to do so to the electrician's problem. One will generally find logic applied to those activities where substantial resources can be saved through its application, but will not necessarily find logic applied where its application will make no difference. With nerve testing, it seems logical to test at every point possible. A positive block at Colles' fascia says that a decompression procedure only to Alcock's canal will not help that patient. The more information that is available prior to surgery, especially given the pitfalls of current testing, and very especially given that re-operation entails difficulties of its own, is the only responsible manner in which to approach PNE.

 

            B. On opinions given on the forum

 

In a recent edition of the Bay City Journal, a Biloxi, Mississippi newspaper, two avid hunters were pictured along with their kill, a 200 pound Russian boar. The caption, however, read “bore”, leading one to suppose that a generation of Biloxi youth would now associate such misspelling with this elegant animal. What I do not want to happen here, on this forum, is for a patient with pudendal distribution or pelvic pain to accept as fact the verbosities of some of our contributors. There are those here who simply give their experiences, diagnostic and therapeutic, as a means of informing others. There are those, like Karen and Les, whose writings reflect some academic experiences as well as a thorough review of the available knowledge on the subject of neuropathic pain and pudendal entrapment. There are physicians, like Chuck and Marianne, who are seeking answers, and contribute to our understanding by asking relevant questions and posing certain theories, which are then labeled as such. There are those who comfort with kind words and sharing hope. And then there are those whose views are proposed as fact while the truth to these propositions is nowhere to be found.

Because one sits in the bleachers and catches the home run ball does not automatically make that individual a professional batting coach. Because one has been so fortunate as to recover completely following pudendal decompression does not qualify that person to teach neurosurgery. Such behavior in and of itself does not concern me. What does concern me is that the innocent, truly searching human who, in the midst of the misery of pudendal neuropathy, will grasp at anything, perhaps even suppositions found here but grounded in neither reason nor fact. This site seeks to do much, but what it does not seek to do is mislead. Those who contribute have a duty to qualify remarks, especially when remarks are submitted in quantity.

Let's look at two examples of misleading information. The first is rather harmless, the second potentially less so. In the same post in which she calls me “patronizing”, one member writes: “You also say that vaginal birth injures tissues and the only issue is to what degree. I know plenty of women who had no tearing, no pain afterwards, and no dysfunction. So I further disagree that injury always happens.”

While we should appreciate disagreement, such dispute should be substantive. Granted the member may not have immediate access to an obstetrical textbook, but the internet lists more than 54,000 sites in which pelvic floor dysfunction and pelvic injury following normal labor is discussed. One such site is: http://www.cmaj.ca/cgi/content/full/166/3/337.

That injury occurs during normal uncomplicated labor is not a subject of debate among obstetricians, so one wonders why it should be debated here. Yes, we all know women who show no flagrant signs of postpartum injury. I was one, and fortunately so are most women. But this does not diminish the credibility of the science, nor does it require the imposition of reverse logic. Instead, it is most logical to propose that woman cannot go through all the tremendous physiological changes that occur during pregnancy and delivery without some injury to supporting structures, mucous membranes, pelvic muscles, or the cervix. That one might recover quickly and without noticeable residual effect is not only a testament to God’s creation of woman, but it is also the result of a process of healing that has evolved a maturity and serenity over time.

When we tell our men folk of the terrible pain that accompanies labor and delivery, and when we laugh in comparing this pain to everyday agonies that accompany the exercise of manhood, are we honest with them? Is the pain of labor and delivery that severe? If so, as we often say it is, what do you think our axons were telling us with all that afferent sensory stimulation.... does this pain come to celebrate the expectant birth? Doesn't it seem much more logical that our sensory apparatus throughout the pelvis is screaming "injury" to the cord?

The other example is this. A member wrote: “Scans such as MRI don't show nerves, so it is not surprising that you had the experience that you did.” I found this quote particularly interesting since today I was examining a L4/5 nerve root on an MRI scan. The neurosurgical resident standing beside me remarked: "Interesting the displacement...more posterior than lateral. Should be easier to get at". "Nonsense", I rebutted. "That nerve is only in your imagination. It can't be seen on scan." I had learned this medical fact on the forum.

What if a guest had read her statement of fact, decided against an MRI on the basis of that post, and died 8 months later from an osteoblastic malignancy that would have been picked up by scan? The same with our new mother. What if her pelvic pain was from a deep perineal abcess that resulted from fecal contamination of the deep wound that occurred during delivery. At 5 weeks an undiagnosed abcess is low on the index of suspicion, but it still ranks far above PNE. Every bout of short term perineal and pelvic pain is not going to be PNE, nor is it going to be readily amendable to PT. Given the brief interval between delivery and pain, it is the obstetrician who should determine the merits of a PT evaluation.

More importantly, this young lady's doctor has had 10 - 11 months to get to know his patient well, maybe even longer. We have 2 or 3 paragraphs. What makes better sense... to let the doctor give guidance, or some far away internet user.

 

            C. Assisting others by sharing information

 

Karen's last post is not just thoughtful and sincere, but it is filled with the elegance of wisdom and experience. One must do exactly as she suggests if they are to expect even a small measure of satisfaction from a visit to their physician. For if the symptom complex is outside of that physician's level of expertise and knowledge, even if the symptoms appear to be due to a process within that physician's specialty, it is highly doubtful that physician will take the time that evening to search for answers. Karen knows as well as I that this is not the way it should be, and I would wage large sums that it is not the manner in which she confronts puzzling issues in her own patients. But we all know, that for the most part, this is the way it is when most patients go to doctors. The posts I am honored to add to this forum are done with the intent of teaching, but also to explore the many sides of pudendal neuropathy. The more energy and effort each of us puts into thought brings us closer to answers that make sense. These answers then provide patients with information with which to make choices about diagnostic modalities and treatments in the search for relief from a terrible pain. Those who use this forum for information are lucky to have insightful members like Karen and Les and Celeste and Greg and Callie and Marianne and all the other ones (who also deserve individual mention) who are constantly monitoring and offering helpful comments. They are lucky as well to have the occasional antagonist, like L.G., whose experiences are invaluable in relating the not-so-good sides of current care. If anything, this forum is fair, giving credibility to all sides. As for me, it led me to Houston and my current state of relief. I owe far more than I can give.

 

II. On PNE

 

            A. Mechanism of nerve injury

 

Nerves can be damaged in any number of scenarios, by compression, entrapment, or disruption of their usual anatomic pathway. Also by toxins, by viruses (herpes zoster), by trauma, by surgery, by autoimmune disease, by diabetes (diabetic peripheral neuropathy), even by vitamin deficiency (B-12). But while the number of disease processes that can affect the nervous system in some way is large, the types of pathology that can affect an individual nerve alone is limited. This not only narrows the probabilities with respect to injury in PNE, but it is extremely helpful in understanding the cellular mechanisms involved. By doing so, one can make appropriate decisions regarding the efficacy of different treatment strategies, and thereby one's willingness to undertake them. If a strategy makes sense on a biochemical and cellular physiology level, then it is far more likely to be successful. Conversely, if such strategy fails to meet that criteria, while it may be advocated strongly by some, and there may be isolated cases of success (which may or may not have anything to do with the applied treatment), it is doubtful such strategies will measure up when compared to placebo. Just like football, the basics of tackling and blocking, while hardly glamorous, are usually what eventually determine outcome. As one who, like others, suffered for years, it is outcome and outcome and outcome that interests me most. When one considers the possible etiologies of individual or paired neuropathy, they may at the outset eliminate severance, which elicits an entirely different response at the cellular level than one will find in PNE. Yet in numerous places in the forum axonal re-growth is discussed and projected as a mechanism to explain delayed response. Again, severance is not the injury in PNE and axonal re-growth not the cellular response. In severance, the partially or completely interrupted axon has to first seal its interrupted cell membrane, but this occurs in the first hours following injury. Then the repair process is initiated and supervised from the nucleus residing in the cell body. The problem with the now linearly expanding axon is that while the DNA can direct every tiny facet of axonal restructuring within the cell, it has almost no information on how to proceed outside the cell, so that usually in the case of total severance the nerve really does not know where to go or what structures, synapses or receptors to innervate. The re-growth of axons of a non completely severed nerve have the luxury of following the course of those not severed, so the chance of re-innervation is far greater. But the forum addressed notion of measured millimeters per week of axonal re-growth has little applicability to the neuropathology involved in PNE. Besides severance, individual or paired neuropathy can result from blunt trauma, or from structural abnormalities, usually acquired. It is this we will focus on.....

 

            B. Path of Pudendal Nerve and sites of possible entrapment

 

When the pudendal nerve leaves the sacral plexus, it travels posterior to the coccygeus muscle and sacrospinus ligament, and anterior to the gluteus maximus muscle and the sacrotuberous ligament. It then continues inferior-medially, remaining posterior-lateral to the levator ani muscle, but generally before entering Alcock's canal gives off the inferior rectal nerve. The clinical implications here have importance. Since my surgery involved division of the sacrotuberous ligaments bilaterally, and much of my pain was rectal in the beginning, careful dissection prior to Alcock's canal would play a role in recovery. Alcock's canal is basically composed of an extension of the obturator internus fascia, again clinically important. Fascia, like other collagen vasular tissues, can undergo pathologic change, and in doing so, adhere, entrap, compress or otherwise compromise the transiting nerve. Shortly after exiting Alcock's canal the pudendal nerve gives off the perineal nerve which must pass through the superficial perineal fascia (except for a single rectal branch) before reaching its area of responsibility. Whereas the transit through Alcock's canal is parallel to fascia, the transit of the perineal nerve through Colles' fascia is perpendicular, giving rise to an additional consideration of restriction. The pudendal nerve itself must also pass through Colles' fascia, enter the urogenital diaphragm and become renamed (dorsal nerve of the penis in the male, labial nerve in the female). Even as the pudendal nerve becomes another there is ample opportunity for restriction. While I do not know the step by step moves of the surgical procedures involved in PNE surgery, I am aware of those descriptions, and especially the fact that visual exposure is very limited. I am unsure of dissection to the level of Colles' fascia, but I do intend to review operative notes to study the extent of dissection. If one were to compare this to a hundred pair telephone cable, with each set of wires leading off to homes of Family A, the Family B, then Family C, and so on and so on until the last pair of ten or so wires went to the homes of Families Y and Z.


If the main cable is disrupted somewhere between the switching equipment in the central office but before the first wires are given off to Family A, then all the wires will be affected and no family would have phone service. But if the cable is disrupted after giving off service to Families A-J, but before service to Families K and after, then only Families K through Z will be out of service. Given the many variations in human bodies, the different courses an artery or vein might take, even the fact that the appendix can generally be found in one of four positions, or especially the different but complex relationships of the cystic artery, the right hepatic artery and the cystic duct in different individuals, one can reasonably suppose that branches from the pudendal nerve come off in different places in different individuals, and while these branches usually innervate the same structures, the courses to those structures is also variable. More than supposition, anatomical dissection shows this to be true in the case of every nerve. Also, it is not reasonable to suppose that every true case of PNE is due to compression, entrapment, stretching, or irritation at the same location along the pudendal nerve's course. All of this has strong clinical implications in answering such questions as to relief of some symptoms and not others, partial relief of all symptoms but not complete relief, as well as the one we pray for, relief of all symptoms. Nor is it necessarily reasonable to assume that restriction and damage, if caused by displacement, hypertrophy, inflammation or otherwise, cannot be the result of two sites or more, especially given that the processes involved may be regional, involving an area the size of a tennis ball, rather than an area the size of a marble. If the nerve is then freed at one point but not the other, especially if the freed point is the proximal one, then one would expect relief in the posterior perineum but not the anterior one.

 

 

III. On pudendal neuralgia following vaginal or abdominal           hysterectomy

 

1.

 

Vaginal hysterectomy involves the cutting and ligature of the uterosacral and cardinal ligaments, as well as freeing the uterus from its close attachment to the levator ani muscle, but the surgical field should never reach as far as the sacrotuberous ligaments. These should remain unharmed by surgery, with exceptions. Those being the development of scarring and adhesions, or post-operative infection moving laterally to involve these structures. With hysterectomy, by whatever approach, there is some residual weakening of the pelvic floor musculature, but usually this can be minimized by careful operative technique and post op strengthening therapies. Pelvic pain can come from so many sources, and the symptoms might seem to be pudendal in distribution. Because there is a great deal of nerve overlap, and because sympathetic fibers also play a role in sensory innervation to this area, and because of the radiating nature of pain along sensory dermatomes, it is imperative that consideration be given to the myriad pelvic pain pathologies that are not PNE. For those interested in a more technical description, or at the least, a partial listing of the possibilities, try this link: http://www.foamix.co.il/eMedicine.htm

 

2.

 

Here I've quoted, and wonder which of the three procedures you had:

"The 3 common vaginal procedures to suspend the prolapsed vaginal apex are sacrospinous ligament fixation, modified McCall culdoplasty, and iliococcygeus fascia suspension. As originally described by Amreich and modified by Richter and Nichols, sacrospinous ligament fixation is usually performed on the patient's right side to avoid the rectosigmoid (Nichols, 1982). The vaginal apex is attached, using permanent sutures, to the sacrospinous ligament. A thorough knowledge of pelvic anatomy is critical in order to avoid complications. [b][u]Take care to place the sutures 1-2 cm medial to the ischial spine to avoid injury to the pudendal bundle and the inferior gluteal vessels. [/u][/b]Place the suture through—rather than around—the ligament. Excellent results have been reported for correcting vaginal vault prolapse using fixation to the sacrospinous ligament. However, in 1992, Shull and colleagues reported a predisposition for recurrence of anterior vaginal wall relaxation after sacrospinous ligament fixation.

The McCall culdoplasty may be used to correct apical descent or as prophylaxis against future prolapse (McCall, 1957). This procedure uses the uterosacral ligaments, which, if strong, are shortened and reattached to the vaginal cuff after completion of the vaginal hysterectomy. In the authors' opinion, attaching the prolapsed vagina to stretched prolapsed uterosacral ligaments is of little value. The surgeon must be bold enough to grasp the uterosacrals near the sacrum, where they are usually strong and undetached, but careful enough to respect and avoid the neighboring ureters. Intraoperative cystourethroscopy is therefore essential to be sure the ureters have not been ligated or kinked.

The iliococcygeus fascia suspension provides effective cuff suspension, since it attaches the apex to the obturator internus fascia and iliococcygeus fascia with less risk of neurovascular damage than does the sacrospinous ligament fixation (Shull et al, 1993). Alternatively, the authors have described placing the suture through the iliococcygeus and the periosteum at the ischial spine, where it is attached (Scotti et al, 1998)."

How did Nates determine that you had axonal loss and demyelination in all branches of the pudendal? Without cadaver dissection and study, that would be a remarkable feat. And such is not done in other peripheral neuropathies.

Here you go under the knife without past history of pudendal pain, only to waken with symptoms. Either the dorsal lithotomy position of your body during surgery caused pudendal damage, which is possible but would hardly persist, or a branch of your pudendal caught a suture during the procedure. As eloquently as you write and as well as your posts indicate you think you must realize nerve entrapment from an ill-placed suture to be by far the most likely explanation for your neuropathy. Nerve tissue has almost no structure, with less resistance to pressure than does jello. It is extremely fragile, and for that reason as we were created it was done in such a fashion so as to afford nerves and the nervous system the finest protections available to a body. Even the endings of axons that branch up to the skin surfaces do not run along the surface where they could suffer insult. Instead they course deep, then turn towards the surface they innervate. Larger nerves are hidden behind bone and cartilage at every site possible, or tucked deep behind muscle. A nerve has absolutely no defense against a suture.The PNMLT does not measure conduction through individual branches. The peroneal branch could not be accessed through the rectum, nor the dorsal nerve of the clitorus. The inferior rectal branch, which comes off the pudendal prior to its passage through Alcock's canal, is the tract along which the electrical impulses from PNMLT tranverse. If you were told that the PNMLT measured individual branches, and that a determination could be made based on PNMLT that each of these branches were diseased in some way, then you were misled.

Then you were told that the pudendal nerve, on its exploration, "the fibers appeared in shreds". Unless the surgeon opened the epineurium of the nerve, which I greatly doubt he did, because it would serve no utility and increase the possibility of both trauma to the nerve as well as vascular injury, then he could not see the nerve bundles. Since axons are microscopic, he could not have legitimately referred to those. And since nerve bundles of axons are then lumped together and covered with epineurium, he could not see those either.

The wonderful vibes from the tribal group are fine, Amanada. I would join with the Cherokee every night for ritualistic dance if it would work. Your best interests may be paramount, but knowledge and skill must accompany. Ketamine put you at risk with zero possibility of lasting difference. Intrathecal drugs the same. If the purpose was to aid in diagnosis then such modalities can be justified. But when the theory says "no" in fifteen different ways, its not going to work. Just like it didn't. Bedside manners are much appreciated by patients, as well as the caring and concern from staff. But neither of these factor into outcomes when the pathology is real.

No one looked at your pudendal and saw a nerve in shreds. No one tested each individual branch of the pudendal. Your entrapment neuropathy is most likely far distal to Alcock's, has not been seen, and has not been helped.

 

3.

 

Not the pudendal, but some of its tributaries are very close to the wound margins. That's the point with Amanda. Most likely her entrapment is far distal to Alcock's canal. That is why surgery failed her, but also why nerve blocks and other modalities proximal to the entrapment have achieved some short term results. I have previously noted four sites of possible entrapment along the course of the pudendal and its branches, and the arrangement of the entrapment structure in relation to nerve. So while the PT is right... we do not always follow Gray's anatomy... neuropathic pain from distal pudendal nerve branch injury is quite possible with vaginal hysterectomies, and in fact, probably occurs more frequently than thought.

 

IV. On reasons for failed pudendal decompression surgery

1.

 

Like others who have commented, I am sympathetic to your continuing symptoms and pray you can find relief. I am fairly confident based on your aggressive approach (early diagnosis and prompt decision to travel for surgery) that you are still searching for help. The information I am providing is based on common sense and after thorough review of other neuropathic conditions and the results of procedures to remedy those maladies. In addition, I have recently had PNE surgery in Houston (April 17, 2006), and have the additional advantage of an MD son who has done hundreds of median nerve, ilioinguinal, and other nerve decompression procedures. The failure to respond to a technically appropriate nerve decompression procedure has to be the result of one of three factors, or a combination of these three. The first, of course, is that the diagnosis is incorrect. Nerve decompression for an arthalgia or myalgia will effect no relief. As you are certainly aware, the diagnostic triad for PNE (history, PNMLT, and CT guided nerve blocks) lacks the specificity of other testing, ie, a CT scan for cholelithiasis, or a nerve conduction velocity study for carpal tunnel. In fact, a pudendal block, in theory, would give relief from non-neuropathic conditions if the nerve provided sensory innervation to the structure or tissue responsible. An additional aid to the diagnosis of true PNE would be the patient's response to medications that affect only truely neuropathic pain, such as carbamazepine (Tegretol). The second factor would be a technically incorrect procedure. Although we like to think otherwise, surgeons are prone to the same human conditions that affect us all, and it is possible that the pudendal nerve exploration was not as complete or thorough on your day of surgery as it had been the day before or the day after. My son tells me of numerous experiences where a patient was referred to him after failed median nerve surgery, only to find persistent compression and he was then able to effect immediate cure with re-operation. In most cases the initial decompression did not extend sufficiently proximally or distally. The third factor is basically theory at present and has to do with central processing of pain. It is currently felt that in some patients central pain pathways are established and persist despite the elimination of the painful stimuli. This may have something to do with the fact that many post PNE surgery patients take months before symptomatic improvement. As you are aware, many PNE patients suffer for years before the diagnosis of PNE is considered, and it is likely that these central pathways, mediated by the neurotransmitter GABA, become relatively fixed and are slow to inactivate. In your case this should not apply, although research has yet to tell us how long it takes for this process to set up. It is interesting to note that in several hundred median nerve compression procedures not a single patient experienced a recurrence of their neuropathic pain and that after the expected resolution of incisional pain were symptom free. Granted in most patients the diagnosis did not take years and surgery was performed soon after diagnosis, but some patients had delayed seeking care, and surgery was not immediate. These results would run counter to the argument of established central pathways. As for myself, I am now 15 days post-op, and I am doing very well. I had extensive bruising from the procedure, and a small hematoma, but all of the perineal and rectal pain is gone. Being pain free after years of suffering has made this 75 year old feel like 30. I hope you can find an answer to your suffering.

 

2.

 

My words are not intended to supply "sweet comfort", but rather to apply analytical logic to the question of PNE, and to do so in such a way that others can make informed choices. Where there are pitfalls I have made an effort to note them... such as the sensitivity and specificity of the PNMLT. Yes, in theory it should supply accurate data each and every time, but the fact that it does not does not relegate it to worthlessness. When this series of posts began I noted that I also have an MD son who has done hundreds of nerve decompression procedures. I am somewhat surprised that no one has latched onto this. But the role that it played in my decision to undergo surgery was large, and that reason is solely about outcome. During a multi-year period of time in the 1980s he performed 365 carpal tunnel release procedures, and then staff carefully studied the short and long term results. As many of you know, CTS supposedly involves entrapment of the median nerve at the wrist from hyperplasia of the flexor retinaculum, which is due to numerous etiologies, from thyroid disease to occupational ones. The median nerve is much like the pudendal, and like the sciatic... the same things I wrote about before... arrangement of axons, sensory and motor components, etc. In fact, the median is a tad larger, and while they have not been actually counted, there are probably more sensory receptors in the distal digits than in the perineum (which doesn't seem true but makes sense from an evolutionary standpoint). At 1, 4, and 8 years not a single patient had recurrence of symptoms. At 2 weeks following each of 365 releases not a single patient had pain. How can such results be explained? First, apply logic to the neuropathologies involved in true entrapment, and one can see that if a single patient can be cured, then (if the diagnosis is correct) it follows that all patients can be cured. The rate limiting factor is simply the extent and fastidiousness of the dissection. In this, I must boast, there was probably none better... in religious and sometimes extreme preparation, in focused dissection far more proximal and distal (even to the mid-metacarpals) than was customary. The approach was clear... initial exploration provides clear planes of dissection (virgin tissue), and most likely it is this one single occasion in which cure will be the outcome...so make the very most of it. Granted this was in a decade when there was little issue with such things as compensation neurosis and the long term use of narcotics to address chronic pain. Such iatrogenic addictions take from many patients the ability to determine for themselves if pain is still real. My decision to travel to Houston was based on the fact that nerve entrapment surgery can be uniformly successful.
When it is not, I refer back to past comments. I would like to say that in a previous description of the course of the pudendal nerve I wrote of its perpendicular penetration of Colles's fascia, another site of possible entrapment. The body's response to dissection at this point would be much like the response of the tympanic membrance to myringotomy, it would attempt to rapidly seal (over 4-5 weeks). That is why all children undergoing myringotomies also get tubes. Tubes are nothing fancy, just cm long tubes of plastic perhaps 3 to 4 mm in diameter. They are quickly placed in the surgical laceration in the tympanic membrane in order to keep the TM from healing itself and sealing. A very similar tube could be used to protect the pudendal nerve at Colles' fascia... the only adjustment would have to be for size and perhaps length, and to also make a slit down the length of the tube so that it could be easily fitted around the nerve. I also see in the next 5 years the development of much more minute endoscopic equipment that could be used for more distal dissection in PNE and other entrapment syndromes such as the anterior cutaneous nerve entrapment syndrome. It would probably be preferable to combine an open procedure with an endoscopic one which would allow dissection to be carried into places now perhaps unreachable.

Pierre asks about pain at 1 year and worsening at 2. Let's apply what we do know to a situation such as this: First we must assume that he was correctly diagnosed. We know that the axons of his pudendal nerve have undergone degeneration and then regeneration but that the level of regeneration did not match the level of degeneration, and thus the axons are thinner. This occurred prior to surgery, and if the entrapment was released, most likely has stabilized. Nonetheless, velocity and latency will be unchanged, so the value of the PNMLT is compromised, except where the compression has worsened and more axons then become involved (the PNMLT numbers would be higher). <Note: we are talking about a theorical perfect test>. I have given the reasons for persistent symptoms. Worsening symptoms mean that either the entrapment is more severe, additional entrapment at another location (close but separate) has occurred in addition to the initial one, or that some other pathological process has superimposed itself into a area innervated by the pudendal nerve. For example, in someone my age, if at 6 months I do develop a recurrence of sitting pain it would be unwise to assume the pain was pudendal neuropathy when if fact it could be colorectal cancer.

Pierre asks about the implications of a thinner axonal sheath with respect to activities. There are none.... at least none in the real world. If Pierre's pudendal nerve had been completely decompressed and he was now symptom free, he would still carry about the scars of prior entrapment... those being the residual of this process of axonal sheath degeneration and regeneration. In terms of how it would make him feel... it would mean that a sensory response originating in the area innervated by the affected axons would transit to the spinal cord in 4 nanoseconds rather than 2. But this response would be pain only if the sensory receptor was trying to tell such to the cord... it would not be because the receptor was inactive but the cord was fooled into thinking the receptor was transmitting pain, which is the case in PNE.

 

V. On diagnostic testing

 

          A. Practical guide

 

1.

Yesterday I suggested that millimeter by millimeter visualization of the pudendal nerve, and thereby the likely probability of pinpointing entrapment, might be possible in the near future with enhanced MRI software. This morning I discovered (by way of the forum), that in three places in the USA magnetic resonance neurography was being performed. I then attempted to review studies on sensitivity and specificity as well as
the specific anatomical slicing presented by imaging. I read the latest article prepared by those who promote the current technology, and you may find this at:
http://www.neurography.com/images/NeurolClinics-Neurography.pdf.
I also reviewed the 2005 American Medical Association's medical policy and technology assessment committee on Magnetic Resonance Neurography, which says: "MR neurography refers to modifications of MRI using special software and hardware upgrades, which have been proposed for the diagnosis of peripheral nerve disorders. The development of MR neurography enables direct high resolution longitudinal and cross-sectional images of peripheral nerves such that the morphology of the nerve can be visualized. Published literature regarding MR neurography primarily consists of small case series of heterogeneous patients. There is inadequate data regarding the diagnostic performance of MR neurography, in terms of defining the normal range of morphologies, the sensitivity and specificity of identification of abnormalities in comparison to other diagnostic tests, and the impact on the management of the patient." As this modality becomes more refined and tested it will become an important tool in both the diagnosis and pre and post surgical management of the PNE patient.

But for many considering surgery, and for those post surgical patients who have not found freedom from pain as the outcome, modalities that are down the road have little importance on May 8, 2006. There seems no clear cut guide of how to proceed for the symptomatic but undiagnosed. And the post surgical patient with pain is faced with an even more vexing puzzle.

Here I would like to present a modest guideline for the patient with suspected PNE to follow before surgery is entertained, leaving it for each of you to agree, disagree or add, all of which should contribute to our understanding.

1. You must first rule out those conditions, local, regional or systemic, which would mimic PNE but which would not be remedied by a decompression procedure:


a. the following labs:
            CBC, sedimentation rate, C-reactive protein, Thyroid Stimulating
            Hormone assay (TSH), Prostatic Specific Antigen assay (if male),
            Anti-Nuclear Antibody Assay (ANA), CMP (complete metabolic
            panel) Rheumatoid factor, Fasting blood sugars for three successive days,
            Urinalysis, CEA


b. the following imaging studies:
            X-rays of the pelvis and lumboscaral spine
            CT scan of the pelvis
            MRI of the lumbosacral spine


c. a complete physical exam, including a detailed neurological exam

2. If this testing is all normal, then consider each of the modalities which are useful in varying degrees to diagnose entrapment of the pudendal nerve:


a. The PNMLT has a low level of specificity but a moderate level of sensitivity in the diagnosis of entrapment. The test measures a function of nerve velocity called latency. Entrapped nerves conduct an nerve impulse slower than a normal nerve. The purpose of the test is to measure impulse conduction along the nerve in order to compare latency to standard. In balance, there is considerable controversy concerning the reliability of this test, but it is this member's opinion that testing is worthwhile.


b. Magnetic resonance neurography is considered "investigational/not medically necessary" by the American Medical Association, but the literature suggests that improvements in both imaging and interpretation are being made on a regular basis. Information for patients can be viewed at www.neurography.com. It is this member's opinion that current testing is valuable in that there is a greater than 50-50 probability results might provide significant information to the neurosurgeon. In addition, since it is doubtful diagnostic modalities will be developed because of concern over PNE alone, participation in developing technologies will increase both the credibility of PNE as a syndrome as well as expand the knowledge base upon which future PNE patients might rely.


c. CT guided injections are diagnostic blocks of the pudendal nerve at specific locations which help determine the location of pathology. They are not specific for PNE, but their sensitivity for pathology is high. It is possible to be even more selective and block at each anatomically conceivable area of entrapment. The development of this capability would be straight-forward and highly recommended. Also recommended is a practice of careful sensory testing following diagnostic blocks. Far more information could be obtained from vibratory testing and two point discrimination, then carefully documented, than the current practice of checking results by phone. The applicability of such information in determining other sites of possible entrapment after failed procedures could be significant.

3. If such testing suggests PNE, then the decision for surgery should be well informed. Many physicians are skillful, but it is the wise physician who appreciates the partnership with their patient that knowledge will bring. You will have reached this point only because you have suffered much. To guide you out of entrapment your surgeon will need both wisdom and skill. Make your choices well informed ones. Speaking for many others in this forum, we wish you the very best.

4. If pain is totally relieved from Botox, then the pain is not neuropathic from pudendal entrapment at Alcock's. The pelvic floor muscles innervated by the pudendal can spasm and thus place compressive forces on pudendal branches feeding them. If this persisted to such a point that the nerve branch was injured, the pain would be neuropathic, but again, the site of injury would not be at Alcocks. The sole mechanism of action of Botox is at the neuromuscular junction, the site at which the nerve passes on to muscle instructions that have been received from the cord. The action of Botox at this site is quite well understood, blocking the transfer of information from the nerve to the muscle, resulting in muscle paralysis. The paralysis is flaccid, not rigid. The muscle becomes totally relaxed, unable to contract without orders from the cord. Only if the pudendal passed though a muscle that was in a state of constant or almost constant contraction, which it does not, could muscle be held liable for neuropathy (except for tiny branches, which could be liable).

If pain is relieved from Botox, then PT is not only advisable, it is necessary in order to prepare the pelvis for the time when the effects of Botox have worn off. Only when Botox affords no relief, and PT causes additional pudendal distribution symptoms, is PT inadvisable.

While Botox works at the junction between muscle and nerve, it does not affect sensory afferents coming from muscle, or from areas surrounding muscle. A pathological process affecting the pelvis in the area infiltrated with Botox would nonetheless generate transduction forces that would be interpreted and recognized as pain. A nerve block, however, defeats transmission in the area of administration, so that any nociception, whether nociceptive or neuropathic, whether from laceration, fracture, tumor, or nerve entrapment, regardless of etiology, would not reach the cord or brain.

I believe this allows us to suggest the following: do not entertain PNE decompression until you have undergone a trail of Botox therapy. If your pain is musculoskeletal, and relieved by Botox, you will not find relief from surgical decompression at Alcock's. Instead, all efforts.... PT, medication (including Botox) ... should be focused on achieving muscle relaxation on command. This needs to be added to the recommendations to the patient with PNE symptoms.

 

2.

 

This is in response to your request for information on the utility of the above specified laboratory tests in eliminating pathology that might mimic true pudendal nerve entrapment. Your question involved the context of pathology that would not otherwise be revealed by scanning modalities. In another thread you patiently explained to me the difficulties involved in deciphering medical terminology. Unfortunately, as I explained later, it is only possible to dissect this terminology but so far. Here I will attempt to do just that. But keep in mind that at 75 this mind is approaching senility, and could lapse into much too technical a discourse. If that happens, please query me on a single item or two, and I will explain more carefully.

Some of the testing recommended could reveal disease both in lab results and on imaging studies as well as on either alone. For example, carcinoma of the prostate that was metastatic both to bone as well as adjacent tissue would most likely result in an elevated PSA, an elevated alkaline phosphatase on the metabolic panel, as well as bony lesions on X-rays of the pelvis, and soft tissue masses on pelvic CT. Still, the PSA could be elevated in the absence of other findings, and while elevations do not necessarily mean cancer, they would demand thoughtful evaluation of the prostate. Since the prostate is located in an area that has sensory innervation by the pudendal, PNE would have to take second place until significant prostatic pathology was eliminated as the source of pain. Likewise, I think that it is important for all clinicians to realize, especially those who diagnose and treat PNE, that the presence of disease such as prostatic carcinoma does not totally exclude the possibility, however remote, that the patient with unresolved pain could also be suffering from a disease such as PNE.

You are aware that disease affecting peripheral nerves can be intrinsic to the nerve, extrinsic to the nerve, or both. Even more confusing, within the nerve disease can be either intrinsic or extrinsic to the axons. There are many diseases that will affect the nerve either at its origin, down its path, or within its own cellular processes, and do so in such a way that the result is pain. The acronym TITMEND, though not all-inclusive, is useful as a guide to etiologic categorization: toxic, infectious, traumatic, metabolic, endocrinologic, neoplastic, or degenerative. Within one or the other of these categories can one find the cause of most disease, and in each of these categories one can find disease processes that would affect the pudendal nerve.

But for example of the utility of lab testing for disease that would not be evidenced by scanning, let us consider the case of diabetic peripheral neuropathy. It is quite well recognized in medical communities that most folks with type two diabetes are actually diabetic for 4 to 7 years before diagnosis, and 5 million is the figure generally given for the number of undiagnosed diabetics in our population. In addition, almost 10% of these undiagnosed diabetics are felt to already have neuropathies due to their diabetes before they are diagnosed. That means that 500,000 Americans have peripheral neuropathies due to a condition yet undiagnosed. Even this does not fully portray the possibilities for non entrapment pudendal neuropathy due to diabetes. People whose fasting blood sugars run between 100 and 125 are considered pre-diabetic, and studies show this group of Americans to be at risk for neuropathy as well. The lab test... fasting blood sugars times 3...is given as a recommendation because diabetes and pre-diabetes is prevalent in our society, it is often asymptomatic, and the statistical probabilities of it producing neuropathy is far greater than entrapment. Granted that long standing sitting pain should have led to an earlier work-up to exclude such a possibility, but it is this member’s contention that all avenues should be explored and re-explored before the commitment to surgery.

Several members with recognized diabetes have written about suspected PNE. For them diagnostic testing in the form of nerve blocks and PNMLT have little promise. Blocking the pudendal would temporarily relieve the distress of almost any illness affecting it, including a neuropathy due to diabetes. Studies on the validity of PNMLT in the diabetic, to my knowledge, are unavailable if performed. And if so, they most likely represent such small numbers that little confidence can be found in their results. The known diabetic with sitting pain has to rely solely on the wisdom of the recommendation of his/her physician, but so often this is insufficient.

 

3.

 

In chess one weighs the statistical probabilities of every move in anticipation of your opponents. Yes, diabetic neuropathy usually affects the distal extremities first, and a research article I gave web directions to above partially explains why. But diabetic neuropathy affecting the extremities first is not always the case. Given the large numbers of people with undiagnosed diabetes, the fact that they may not be having the typical symptoms of fatique, urinary frequency and nocturia et al, there is still a greater likelihood that isolated pudendal area pain could be diabetic neuropathy than it could be PNE. Before this forum I knew of no patients with PNE, but I knew several with isolated diabetic pudendal neuropathy. For the cost saver a FBS can at times be free.... the health department, the knowledgeable diabetic neighbor with a glucometer, and sometimes the local pharmacy does free glucose testing.

As far as using the CEA to rule in or out an occult malignancy before entertaining PNE surgery, there are certainly no double-blind studies to support it. Yet if one were to accept the premise of ruling out all disease that has a greater statistical probability of causing pudendal pain than PNE, this test would have efficacy. Perhaps not to some, but to the clinician who is a grandmaster at clinical thought and diagnosis, this is the way they would proceed.

I have argued that it is necessary to take the disease and all its diagnostic and therapeutic remedies to the cellular and biochemical level in order to prove or disprove utility. But to do so in a discussion of proposed testing would require an investment of time for explanation that I anticipate most members would neither appreciate or understand.

 

            B. PNMLT

 

                        1. Neurophysiology  

 

There remain many unanswered questions in the field of peripheral nerve injury and nerve regeneration. Yet some assumptions can be made with a good degree of medical certainty. These assumptions rest on an understanding of latency and the current state of knowledge with respect to neuronal healing. Although this may not be new information or helpful to you, I am going to assume otherwise, and give the basis for my answer to your question. Any peripheral nerve, the pudendal nerve included, is comprised of axons of varying diameters. As you well know, the nerve cell has many structures, but is divided into three parts... the cell body, (which contains the nucleus, mitochondria, golgi apparatus and ribosomes) the dendritic process, and the axon. The axon in the pudendal nerve is part of the single nerve cell whose cell body resides in the spinal cord. Multiple axons from multiple cells form a nerve bundle, and many bundles make up the pudendal nerve. Injury to axons within the pudendal nerve results in a dropout of the total number of axons stimulated by the PNMLT and thus you have a decrease in the amplitude of the evoked electrical response, called the compound motor action potential. What nerve latency is, in essence, is a reflection of the pattern of activation of the separate axons that make up the pudendal nerve. The axons in the nerve that are myelenated the heaviest are the axons that deliver the compound action potential the fastest, thus it are these fibers that determine the nerve velocity and also the latency. Nerves transmit via their myelin sheaths, and the thicker the myelin the faster the transmission. Latencies that are prolonged have occurred because faster myelinated axons have dropped out (due to injury such as compression), and thus what is recorded are slower velocities because most of the nerves now have reduced myelin and thus slower velocities of conduction.
That is why, in general, higher numbers in the PNMLT reflect more significant disease in the nerve. Very interesting, recent work has shown that chronic nerve compression injury does not produce immediate axonal pathology but in fact is a Schwann cell mediated disease, and chronic nerve compression induces both Schwann cell proliferation and apoptosis before the onset of axonal degeneration. Since PNE is usually longstanding, it is important to evaluate what happens to the nerve after Schwann cell proliferation, and indeed, these are the changes that produce the abnormal PNMLT. Evaluation of the thickness of myelin and the diameter of axons in chronic compression indicate an alteration in the myelin structure, specifically a dramatic increase in the number of axons with thin myelin sheaths. Measurement of the myelin thickness shows not only a greater than 600% increase in the number of axons that are thin (less than 5 nm thickness) but also a proportionate decrease in the number of axons with thick myelin sheaths so characteristic of a normal pudendal nerve. This takes us to the critical point in the answer. A nerve chronically compressed has many axons that have undergone a process of demyelination and then remyelination at the site of injury, and the remyelination is not nearly as thick as prior to compression. Therefore, with respect to a followup PNMLT following initial surgery, one would expect persistent latency and abnormal numbers, even though the compression has been either relieved, partially relieved, or unrelieved.
The degree of remyelination, however, should have little to no impact on residual pain.

 

                        2. Analogy


Like the PNMLT, in car racing the fastest time is the one that wins the prize. There are many different cars (axons) on the racetrack (the peripheral nerve). Generally speaking, some cars and drivers are more capable than others, and these are the ones that can be predicted to win.


Suppose that a substance had been invented that could coat the cars, making them less resistant to air, the result being faster times. Also suppose that only a percentage of car owners could afford this substance, so that some of the cars in the race were coated and some were not. There would be a far greater likelihood that one of these coated cars would cross the finish line first, and in fact, that coated cars would win every race. Coated nerves (myelinated ones) transmit impulses faster than unmyelinated ones, and win the race in PNMLT. It is the winning time that is recorded, not the average time from each of the contestants. The winning time is then compared to what the usual winning time should be (in a normal pudendal nerve). We know that rain affects the condition of the racetrack so that slower times can be predicted. Similarly we know that some conditions affect conduction in normal nerves, these being such things as age, temperature, even whether or not the nerve is located in the upper or lower extremity (http://jnnp.bmjjournals.com/cgi/content/full/70/3/372).


What the PNMLT measures is the fastest time from the winning car and then compares this number to what is expected of winning times in usual and normal races on the pudendal nerve. If there has been a terrorist event (pudendal neuropathy is sort of like long standing nerve terrorism) at the race track, where an explosion or other insult caused debris to be thrown onto the track, or perhaps displaced the wall surrounding the track so that the space available for driving was limited in this area, then the race cars would have to slow down when they approached this area, and the winning time from the race affected by terrorism would be slower than a race that had not been affected (normal race).

The race cars that have been coated to make them less resistant to air and thus faster are the cars that win the race. Therefore these are the cars that determine the value of the PNMLT. But these are not the race cars that carry the pain impulse around the tract. Coated cars carry instructions to muscle. The uncoated cars are carrying pain stimuli. We assume, and probably rightfully so, that the terrorist event affects all cars on the race track, so measuring the speed of the fastest cars against what is normal allows us to suppose that uncoated cars are likewise affected. You can find far more detailed information at: http://www.uphs.upenn.edu/ortho/oj/1999/html/oj12sp99p45.html.

 

                        3. Sensitivity and specificity

Sensitivity and specificity are two critical measures in determining the utility of any diagnostic procedure. In the case of nerve electrophysiologic studies like the PNMLT, sensitivity refers the procedure’s ability to detect the presence of sensory abnormalities in a group of patients. If the patients being tested are at high risk for neuropathy, such as patients with advanced diabetes, then the sensitivity would be expected to be high. Testing a group of randomly selected diabetic children, however, would naturally include some that have not yet developed neuropathy and yield a correspondingly lower level of detection sensitivity.

A test that is “too” sensitive, however, can result in false positive measures that wrongly identify a healthy patient as having an abnormality.

Specificity is the statistic that expresses the ability of a diagnostic procedure to correctly identify healthy (control) subjects. A specificity of 100% means that there were no false positive measures in the healthy group. Diagnostic tests balance sensitivity against specificity, so that the maximum number of abnormalities are detected with the fewest number of false positives.

The following table presents sensitivity and specificity measures drawn from eight different studies. With the exception of Study #4, each study used randomly selected patients for whom a clinical finding of sensory impairment was not a selection criterion. As a consequence, the sensitivities will vary depending upon the patient population selected. Statistical analyses presented in these cited studies all revealed statistically significant differences between patients and control subjects.


Sensitivity 94% Specificity 100% n = 33 diabetic patients and 54 controls
Sensitivity 77% Specificity 100% n= 29 dialysis patients and 137 controls
Sensitivity 84% Specificity 88% n = 70 radiculopathy patients *
Sensitivity 23% Specificity 100% n = 92 diabetic children and 80 controls
Sensitivity 50% Specificity 95% n = 16 Fabry’s disease patients and 50 controls
Sensitivity 54% Specificity 95% n = 2360 diabetic patients *
Sensitivity 60% Specificity 95% n = 73 diabetic patients and 47 controls
Sensitivity 93% Specificity 100% n = 10 syringomyelia patients and 15 controls

Statistical Analyses of CPT vs NCV Sensitivity
1. Ro, L.S., Chen, S.T., Tang, L.M., Hsu, W.C., Chang, H.S., Huang, C.C. Current Perception Threshold Testing in Fabry’s Disease. Muscle & Nerve, Volume 22: 1531-1537, 1999. Appendix E., Reference 15.

A chi-square SPSS statistical analysis was conducted to compare the detection sensitivity of neuropathy by sNCT/CPT and NCV tests in this study. The CPT detected neuropathy in 50% of the patients. The NCV detected neuropathy in 0% of the patients. There was a significant superiority of the detection sensitivity of the sNCT/CPT electrodiagnostic test over the NCV test in this study (p<0.001, df=1).

2. Katims, J.J., Rouvelas, P., Sadler, B.T., Weseley, S.A. Current Perception Threshold: Reproducibility and Comparison with Nerve Conduction in Evaluation of Carpal Tunnel Syndrome. Transactions of the American Society of Artificial Internal Organs, Volume 35(3):280-284, 1989. Appendix E., Reference 13.

A chi-square SPSS statistical analysis was conducted to compare the detection of neuropathy by sNCT/CPT measure and NCV measures in the median nerve and in the peroneal nerve. The tests were equally sensitive in their detection sensitivity for neuropathy (p<0.193, df =1, median nerve and p<0.707, df = 1, peroneal nerve).

3. Weseley, S.A., Sadler, B., Katims, J.J. Current Perception: Preferred Test for Evaluation of Peripheral Nerve Integrity. Transactions of the American Society of Artificial Internal Organs, Volume 34(3):188-193, 1988. Appendix E., Reference 14.

A chi-square SPSS statistical analysis was conducted to compare the detection of neuropathy by sNCT/CPT measure and NCV measures in the median nerve and in the peroneal nerve. The tests were equally sensitive in their detection sensitivity for neuropathy (p<0.119, median nerve and p<0.701, peroneal nerve).

4. Kurozawa, Y., Nasu, Y. Current Perception Thresholds in Vibration-Induced Neuropathy. Archives of Environmental Health, Volume 56(3):254-256, 2001.

A. A chi-square SPSS statistical analysis was conducted to compare the detection of stage 3 vibration neuropathy by sNCT/CPT measure and NCV measures. The tests were equally sensitive in their detection sensitivity for this stage of vibration neuropathy (p<0.308, df = 1).

B. A chi-square SPSS statistical analysis was conducted to compare the detection of stage 2 vibration neuropathy by sNCT/CPT measure and NCV measures. There was a significant superiority of the detection sensitivity of the sNCT/CPT electrodiagnostic test over the NCV test in the detection of this stage of neuropathy(p<0.000, df=1).

5. Rendell, M.S., Katims, J.J., Richter, R., Rowland, F. A comparison of nerve conduction velocities and current perception thresholds as correlates of clinical severity of diabetic sensory neuropathy. Journal of Neurology, Neurosurgery and Psychiatry, Volume 52:502-511, 1989. Appendix E., Reference 5.

A. Among the diabetic subjects in this study classified by both Physical Score and Symptom Score as normal, the 5 Hz CPT measures were the most “effective discriminator” of these “normal” patients in comparison with the NCV and other measures in the study (p<0.05, Tables 6 and 7). This finding is a indication of the specificity of the CPT evaluation based on clinical findings.

B. Lower extremity sensory NCV measures were unable to discriminate between the normal and abnormal subjects as classified by both Physical Score and Symptom Score. All three frequency CPT measures were able to discriminate between these same two groups of subjects. The significance of these observations ranged from p<0.01 (5 Hz and 250 Hz) to p<0.05 (2 kHz). This finding demonstrates that the CPT evaluation is a more effective discriminator than the sensory NCV. See Table 7.

C. A strong correlation is defined as a correlation coefficient > 0.5. Correlations of the upper and lower extremity Physical and Symptom Scores with the CPT and sensory NCV measures were significant, with p values ranging from 0.001 to 0.05. The strongest correlation was observed with physical evaluation and the 250 Hz CPT from the lower extremity (Spearman correlation coefficient = 0.57, p<0.001). The sensory NCV from the same extremity showed a very weak
correlation (Spearman correlation coef. = 0.15, p<0.05). See Tables 4 and 5.

D. When the electrodiagnostic measures were further divided into “Relatively Abnormal” and “Very Abnormal Groups”, the sensory NCV was unable to discriminate between the normal and relatively abnormal groups Physical or Symptom scores in either the upper or the lower extremity. In contrast, the CPT measures were able to discriminate between the normal and relatively abnormal groups Physical or Symptom scores in either extremity (p<0.01). These findings indicate that the sensory NCV is not effective for discriminating moderate neuropathy, but is effective for discriminating severe neuropathy. In contrast the CPT measures are effective for discriminating both moderate neuropathy, and severe neuropathy.

6. Masson, E.A., Veves, A., Fernando, D., Boulton, A.J.M. Current perception thresholds: a new, quick, and reproducible method for the assessment of peripheral neuropathy in diabetes mellitus. Diabetologia, Volume 32:724-728, 1989.Appendix E., Reference 7.

A. This publication does not permit a direct comparison of the detection
sensitivities of the sNCT/CPT and the NCV measures.

B. A significant correlation between the 2000 Hz CPT measures and the NCVmeasures (Spearman correlation coefficient -0.66, p<0.005) was reported inTable 2.

C. A significant correlation between the 5 Hz CPT measures and the thermalmeasures (Spearman correlation coef .34, p<0.005) was reported in Table 2.

D. No significant correlation was observed between the NCV and the thermal endorgan sensory threshold test as reported in Table 2. This was expected as the NCV is a large fiber test and thermal end-organ stimulation is conducted by the small fibers. As neuropathies can selectively effect the large or small diameter nerve fibers the ability of the sNCT evaluation to test the function of both sub-populations of nerve fibers makes this test a more effective tool for the evaluation of neuropathy than the NCV test.

Based on the above publications the sensitivity of the sensory nerve conduction velocity testing for the detection of polyneuropathy is between 0% and 79%.

One must also take into account these studies were undertaken in world class electrophysiologic laboratories and performed by highly skilled technicians under strict quality assurance standards and supervision.

This data confirms conclusions drawn in posts previously presented. The PNMLT is a modality we have, and gives information which must be viewed in light of results from the remaining arms of the diagnostic triad. Alone it has little value. Intra-operatively and post-operatively it has no value. To answer the question of a patient with a normal PNMLT yet with severe pain having a greater likelihood of poor outcome from surgical decompression versus a patient with an abnormal PNMLT, this type of conclusion cannot be reached. It cannot be reached based upon theoretical approach, and there are no controlled studies which would allow one to dispute such theory. In fact, such a statement is contrary to theory. Let me explain. High numbers on the PNMLT should reflect disease involvement of an increasing number of heavily myelinated axons, while normal numbers reflect such axons are as yet uninvolved in the compression neuropathy (or there is no neuropathy). Differentiation of pain into categories like severe does not reflect on transduction forces nor on transmission, but instead is a very poor indication of disease severity because it involves some modulation but is mostly a matter of perception. Several considerations must be made in the patient with a normal PNMLT and in severe pudendal distribution pain. If the CT guided (where we can reasonably assume the analgesic has reached the pudendal) nerve block gives the patient immediate relief of pain, and the duration of such analgesia is consistent with the labeled duration of effect of the analgesic, then it can be concluded with a reasonable degree of certainty that the pudendal nerve is indeed responsible for delivering nociceptive input to the spinal cord. This conclusion can be made whether the PNMLT is normal or not.

A second CT guided block (and indeed, a third or fourth) should achieve the same results as the first. If not, one of the following must apply: (1) for whatever reason, the analgesic did not reach the pudendal nerve, (2) the analgesic was mislabeled, thus no analgesic reached the nerve, (3) the response to the first injection was a placebo one, (4) the neuropathy has extended proximally to involve the nerve between the site of the first injection and the spinal cord, (5) since the time of the first injection another disease process has involved the pudendal nerve proximal to the site of the initial injection.

It has been alleged that degree of PNMLT abnormality correlates with prognosis and well as severity of compression. There are no controlled studies to support this view. Moreover, carefully designed, placebo controlled studies of commonplace compression neuropathies generally find no correlation between degree of entrapment as visualized on MRI with severity of symptoms, probability of analgesia following decompression, or degree of abnormality on electrophysiologic testing. Given the limitations of PNML testing, it is not reasonable to offer the results of this test as a prognostic indicator of surgical decompression.

 

                        4. Validity of intra- operative and post operative PNMLT

 

The axons injured by compression or some other structural reason do not form new axons. The ones you have at birth are with you all through life, and the very same axons that formed the pudendal nerve when you were seventeen and seemingly indestructible are still there... in bundles that form the pudendal nerve. The myelin sheath that coats each axon degenerates and then regenerates once injured. There may be several episodes of degeneration and regeneration, but in almost all cases the regenerated myelin sheath is thin, unlike the sheath of a healthy nerve. Since thickness of the sheath determines velocity of conduction of the nerve impulse, a thin sheath conducts slower than a thick one. It is likely, and appears to be so both in research and cadaver dissections, that the axon will never regain its original myelin thickness. Therefore, yes, Greg, you are right. Dr. Ansell's belief is more than that. It is correct based upon fairly extensive neurophysiologic studies. Latency will not change during surgical decompression, and I'm certain that it is easy for you to see this given the nature of latency as previously described and the cellular changes that are responsible for delayed conduction. The severity of pain during my illness made it clear that hyperbole and subjectivity is not the way to approach PNE. Providers and patients need to make decisions based on the most current evidence-based, non-biased science, and such science is generally repetitive, for researchers as well as those who depend on research find comfort when results are reproducible. It is important to realize, as I wrote before... demyelination with insufficient remyelination does not account for persistent symptoms in supposedly decompressed patients. Once again I allege the only reasonable probabilities for this: incorrect diagnosis, insufficient decompression, or established central pathways at the cord or cortex level that take time to resolve despite the absence of stimuli. The latter would explain progressive improvement in a subset of post-operative patients, and I am aware of several medications that would speed this along.

 

                        5. Reasons for PNMLT despite concerns over validity

 

As I have written before, the sensitivity of the diagnostic triad leaves much to be desired. The same is true of its specificity. But suppose we were to dismiss the PNMLT altogether. This would be much like dismissing the upper GI series, which misses 65% of endoscopically proven gastric ulcers, or even the CXR, which misses most bronchogenic carcinoma until the tumor has had 5 years to double and spread to regional nodes. Or we could dismiss the PSA, since levels of 4 to 8 are gray and may or may not suggest disease, or could be the result of tobacco dependence. No, what we do is take the modalities that are available to us and constantly refine them, improving technical skills as well as technology, until new modalities become available. Just like baking a cake, sometimes it is easier and more efficient to adjust a recipe than to start from scratch. What is known to each of us is that resources for PNE are few and far between. We have no lobby of Hollywood stars pleading with Congress for research monies, as did the sufferers of AIDS. Our numbers are relatively few and hardly spark the interests of a pharmaceutical industry whose focus is the bottom line. Although my state has huge, reputable medical centers, I, like others, have had to travel out of state to see a physician who has even heard of PNE. So while PNMLT is not a panacea, it is a modality we have. The future may bring new technologies that are far more reliable, but these will be only as good as their operators. Colonoscopy misses 5% of colorectal tumors, but in the hand of others, and on a good day, the miss rate is zero. If a technology and its results can be correlated with gross and microscopic pathology, then it is much more likely to be successful in diagnosis, as well as in monitoring improvement. Nerve conduction technology should improve dramatically in the next decade.

Intervertebral disc herniation should be ruled out before PNE surgery is contemplated, and an MRI is the most reliable method to do so. In addition, pelvic pathology that could produce a pudendal neuralgia, either from compression or invasion of the nerve, should also be ruled out, and a pelvic CT scan should suffice. I had both before making the first trip to Houston. At 75, most of my discs were bulging (discs dehydrate with age and uniformly bulge), but there was no encroachment on the neural canal.
In fact, we could pull 100 asymptomatic folks out of the isles of Walmart, do MRIs of their lumbosacral spine, and more than 30% would have significant disc disease. Like PNMLT, MRIs are not a panacea for diagnosis.

But I promised to write about nerve injury, those "damaged" and those compressed. For the sake of an intellectual exercise I will write about the sciatic nerve rather than the pudendal. Both are peripheral nerves, with the same configurations, same arrangement of axons, same location of cell bodies within the cord, same type of synapses both dendritic and axonal. Except for size, location, areas innervated, and location of cord synapses, they are the same. We do ourselves and others disservice by thinking somehow the pudendal nerve is subject to a disease process that affects that nerve alone. All peripheral nerves can suffer compression and are subject to disease. While the structure or lesion precipitating compression may be different, the changes that take place in the nerve are the same. The same is true of systemic diseases affecting peripheral nerves. But since polyneuropathy is essentially ruled out in most of our cases, especially given the duration of symptoms, I will avoid a discussion of those injuries and the neuropatholgies involved. Rather I will focus, or attempt to do so, on disease and how it affects a single sciatic nerve. In essence, that is what has happened to us.

 

                        6. Botox and the PNMLT

 

Botox should not affect the PNMLT. Botox affects the neuromuscular junction at the efferent nerve ending, working to block any impulse from the brain from reaching the muscle. In theory this blocks all the impulses flowing from the cord to muscle while the cord is in a hyper-excitable state from chronic pain.

The PNMLT measures impulse conduction along afferent axons. The neuromuscular junction is not involved in this measurement, nor any synapse.... therefore Botox will not affect it.

 

                        7. Nerve testing of penis

 

Electrophysiologic testing of the penis, with either positive or negative results, have about as much efficacy in ruling in or out pudendal neuropathy (of whatever cause) as does measuring the growth of one's eyebrows.

This test (see: http://www.hawaii.edu/hivandaids/Innervation_of_the_Human_Glans_Penis.pdf#search='nerve%20conduction%20studies%20in%20penis' )
measures conduction through a very short length of nerve (dorsal nerve of the penis). Pudendal neuropathy does not arise from entrapment along the dorsal nerve of the penis. PNE could be present while such a test was positive or negative. PNE could be absent while such a test was positive or negative. There is no validity of such a test to PNE. Surely your doctor did not intend to rule out PNE with nerve testing of the penis ???

 

            C. MR Neurography

 

Does MR neurography have application to PNE, either for pre-operative determination of location and degree of entrapment, or for post-operative determination of successful decompression? In another post I have written:

"Magnetic resonance neurography is considered "investigational/not medically necessary" by the American Medical Association, but the literature suggests that improvements in both imaging and interpretation are being made on a regular basis. Information for patients can be viewed at www.neurography.com. It is this member's opinion that current testing is valuable in that there is a greater than 50-50 probability results might provide significant information to the neurosurgeon. In addition, since it is doubtful diagnostic modalities will be developed because of concern over PNE alone, participation in developing technologies will increase both the credibility of PNE as a syndrome as well as expand the knowledge base upon which future PNE patients might rely."

Yet this dismisses other considerations, each of which suggests less reliability, but which in fairness must also be presented.

1. If the CAUSATIVE MECHANISMS involved in PNE are consistent with those of nearly all other cases of nerve entrapment syndromes in the human body, and are also consistent with the vision of injury expressed to me by Dr. Renney during my original visit to Houston, then the mechanism and thus the injury will most likely not be seen on MR neurography. I have previously written that the causative mechanism is most likely as follows: "at least one side of the compressive surface is mobile, so that chronic injury to the pudendal involves either a repetitive slapping insult, or a sliding-rubbing-against-sharp-or-tight-edges type of insult"., neither of which would likely be demonstrated with current MR neurography technology. This is not to say that as software is further refined, so that the nerve could be actually visualized during movement, and thus a more reliable indication of pathology would result.

2. Visualization of pudendal nerve injury might be solely positional (POSITIONAL ENTRAPMENT), in which case the above described software modifications might help. And also answer for us the question of whether or not the constant pain that is the hallmark of long standing and unresolved pudendal neuropathy represents central sensitization with continuing but intermittent injury or rather a progression to continuous injury. In such case where injury is solely positional, then only a procedure performed with the patient in that position would demonstrate an abnormality in the nerve.

3. While those who have reason to seek neurography for failed lumbar spine surgery number in the hundreds of thousands, the number of patients seeking MR neurography for pudendal neuropathy would be few. As such, the repetition of study that gives boost to improvement in clinical skills in both analysis and interpretation of results is not going to be present at any of the three centers where this software is available in the US. Moreover, the length of nerve that must be examined in failed lumbar procedure is short. In contrast, the pudendal courses over a wide area, and as I have written before, there are four possible sites of entrapment.

4. Finally, the demonstration of a compressed segment of pudendal nerve on MR neurography might be meaningless unless studies had shown in a statistically significant number of patients that such a lesion corresponded to anatomical findings at the time of surgery and surgical decompression of this MR neurography demonstrated segment resulted in relief of pain. Given the usual duration of symptoms in PNE and the role of central sensitization in perpetuating pain long after the injury to the nerve has been removed, it is doubtful that such rigorous scrutiny could ever be applied to PNE and MR neurography.

 

            D. Nerve blocks

 

1.

 

Karen is correct in that the duration of analgesia from a nerve block should be equal to the expected duration of effect of the analgesic, but no longer. If the analgesic is marcaine, the analgesia may last several days. If the analgesic is xylocaine, the concentration of drug selected can be varied, but the effect should last no longer than 12 hours at the extreme.


Several studies have demonstrated that the prolonged and very occasional permanent effect of a nerve block to the median nerve was not due to the anti-inflammatory nature of the attendant corticosteroid but was rather due to a reduction in constriction of the nerve.
Apparently steroids injected locally help break down adipose tissue (fat). In these studies it was shown that a reduction in the amount of fat beneath the transverse carpal ligament (which was entrapping the median nerve) relieved the entrapment to such an extent that neuropathy resolved. Generally speaking, steroids have no effect on scar or fibrotic tissue, unless that fibrous tissue is acutely inflamed, such as an acute tendonitis, or a active collagen vascular disease process. Since there is very little fat, if at all, in Alcock's, combinations of local anesthetics with corticosteroids injected into this area will have no consequence other than the transient analgesia expected of the anesthetic.

If pain is totally relieved from Botox, then the pain is not neuropathic from pudendal entrapment at Alcock's. The pelvic floor muscles innervated by the pudendal can spasm and thus place compressive forces on pudendal branches feeding them. If this persisted to such a point that the nerve branch was injured, the pain would be neuropathic, but again, the site of injury would not be at Alcocks. The sole mechanism of action of Botox is at the neuromuscular junction, the site at which the nerve passes on to muscle instructions that have been received from the cord. The action of Botox at this site is quite well understood, blocking the transfer of information from the nerve to the muscle, resulting in muscle paralysis. The paralysis is flaccid, not rigid. The muscle becomes totally relaxed, unable to contract without orders from the cord. Only if the pudendal passed though a muscle that was in a state of constant or almost constant contraction, which it does not, could muscle be held liable for neuropathy (except for tiny branches, which could be liable).

If pain is relieved from Botox, then PT is not only advisable, it is necessary in order to prepare the pelvis for the time when the effects of Botox have worn off. Only when Botox affords no relief, and PT causes additional pudendal distribution symptoms, is PT inadvisable.

While Botox works at the junction between muscle and nerve, it does not affect sensory afferents coming from muscle, or from areas surrounding muscle. A pathological process affecting the pelvis in the area infiltrated with Botox would nonetheless generate transduction forces that would be interpreted and recognized as pain. A nerve block, however, defeats transmission in the area of administration, so that any nociception, whether nociceptive or neuropathic, whether from laceration, fracture, tumor, or nerve entrapment, regardless of etiology, would not reach the cord or brain.

I believe this allows us to suggest the following: do not entertain PNE decompression until you have undergone a trial of Botox therapy. If your pain is musculoskeletal, and relieved by Botox, you will not find relief from surgical decompression at Alcock's. Instead, all efforts.... PT, medication (including Botox) ... should be focused on achieving muscle relaxation on command. This needs to be added to the recommendations to the patient with PNE symptoms.

 

2.

 

I want to run some things by you. Since your son has had both an MRI and a CT, and I presume were normal, I would also like to presume that work up included blood tests to rule out systemic disease.

You've seen a urologist, so testicular malignancy, the most common cancer in a male that age, has been ruled out. To me that is a critical determination. You write that you were given a diagnosis of prostatitis. Since antibiotics were prescribed, I presume the diagnosis was bacterial prostatitis. I also presume that the urinalysis showed leukocytes, and a positive result was received on urine culture. These are essential for such a diagnosis. The urine specimen should have included premassage and postmassage of the prostate. This test is known as the 2-glass test. If the 2 glass test was positive, the culture of prostatic fluid positive, then the diagnosis of prostatitis was not false. If these tests were negative, or worse... not done... then the diagnosis is suspect, and could certainly be false.

Then the visit to the neurologist, and on to Dr. Antolak. You are certainly putting in the effort, and I admire that. You were told to be patient "that the effects of the injection may not be noticable for 5-6 weeks". First, the failure to obtain immediate and complete though temporary analgesia after the injection of 6 cc of marcaine is a major red flag, and lowers the index of suspicion with respect to PNE. Second, much of what Dr. Antolak told you is suspect. The literature does not support his contention that the effects of steroid injection may not be noticable for 5-6 weeks, nor does clinical practice in other areas of nerve entrapment. Placebo has a response rate of 47%, so a response rate as given by Dr. Antolak (15-70%) could easily be placebo. In fact, symptomatic improvement as measured in 5 or 10 minute intervals of sitting is no reasonable measure of treatment efficacy. You were told your son "has damaged a nerve that will require many months to heal". Just the simple fact that there was no immediate analgesia with a potent nerve block should give pause to such a remark. You have a normal PNMLT, a negative response to nerve block, and yet the doctor is telling you the problem is neuropathy. "pain under his stomach" is a little difficult for me to locate, but from reading your posts in total it is not apparent the distribution of symptoms is predominantly pudendal. And you were told there is a cumulative effect over time, but there is nothing in the literature, clinical studies or pathology models, to support such a statement.

You've heard the saying: two heads are better than one. The most effective way to address a chronic pain state is with an interdisciplinary team approach. A psychiatric evaluation should be a part of any such team effort. Chronic pain is both influenced by emotions and precipitates emotions, some of them destructive. Someone needs to explore work history, social history, drug history, school history, for all of these histories might give important clues. The team approach needs to be guided by what movements the physical therapist says he can and cannot make. It needs to be guided by response to medication that target specific generators of pain, whether nociceptive or neuropathic, for that response, or lack of response, also gives clues. It might be helpful to bring in an occupational therapist as well. You need a physician to head such a team that is willing to listen, to search the literature, and to make sense. When a physician tells a patient that they need look no further (but offers no results that would stand up to scruity) and advises that you bide your time (although his treatments to date have resulted in essentially zero response), that patient needs to take a hard look at what is going on.

 

3. 

 

Across many topics on the forum the issue of nerve blocks is raised. Some members wonder about side effects, others the probability of cure. Questions abound, and responses usually reflect what physicians have said to patients or family members. It is apparent that there is a lot of false information out there, giving false hope, which, when deflated, then causes suspicion of other modalities which might be effective.

Karen has made it clear, and I totally agree, that the nerve block should be considered a diagnostic tool only. Patients should not go into the test expecting anything other. If the nerve block gives permanent analgesia from pudendal pain, then you can bless the heavens, for you did not have PNE in the first place.

But answering this question about nerve blocks generates many others. Greg writes that he knows people who have improved following nerve block. Pierre has written that PT should not be restarted for 6 weeks following nerve block to keep from "washing away" the steroid. So why do some people improve only to have symptoms recur months later?
What is the length of action of steroids, and are they washed away by increasing the blood flow during physical therapy? These are just two of a myriad of questions surrounding a pudendal block.

In my opinion the two most important questions are these: Aside from the use of a local anesthetic to determine if the persisting pain is carried to the cord via the pudendal nerve, thereby possibly indicating the pudendal itself as the instigator (although again, any structure or tissue innervated by the pudendal past the point of block could also be giving rise to these pain messages), what does the added steroid tell us? Could the steroid itself be damaging to the nerve rather than helpful, and if so, is this harm the mechanism of a post block pain flare?

Steroids are added to the CT guided mix based on two assumptions: either direct pressure or ischemia on the pudendal nerve produces a localized inflammatory process, or an on-going inflammatory process causes swelling of structures adjacent to the nerve and this is a possible mechanism of compression. If one attempts to justify either of these assumptions in the area of pudendal neuropathy, there is nowhere to look. To my knowledge there is no careful study at necropsy, no biospy samples taken at the time of surgical decompression, that demonstrate beyond a doubt the presence of an inflammatory response. Chuck's field of study would allow him to provide greater insight on this issue, but he will tell you that when there is on-going inflammation certain cellular elements are involved. Absent these cellular elements, there is no inflammation. No inflammation, and the use of a steroid is like attempting to pound a square peg into a round hole. In PNE we have no studies to tell us either way.

So lets look at a kindred condition, another entrapment neuropathy, and see what research tells us there.

Investigation 1: In 160 random necropsy examinations, Lindblom and Rexed found 60 nerve root compressions. Forty four nerve root segments were examined histologically by serial section (specimens selected from 17 cases with the most severe macroscopic deformation). The most common findings were atrophic pressure effects sometimes with increased connective tissue, with "diffuse degenerations mixed with regenerative processes . . .especially in the ventral root fibers." No cellular infiltrates were found except for some red blood cells in one ventral root.

Investigation 2: Lindahl and Rexed reported small nerve biopsies of "the dorsal part of the nerve root" of 10 patients operated on for sciatica from herniated disc. They identified no pathology in five, degenerated fibres and dural thickening from pressure effects in three, "cell infiltrates here and there" in one, and "excessive cell infiltration . . .with a preponderance of the mononuclear type" in only one.

Investigation 3: The inflammation theory is further questioned by Gibbs who wrote concerning the thousands of nerve roots he has inspected at disc surgery, "There is . . .a normal vascularisation of the dura covering the nerve root, but it would be rare, if ever, to observe an increase in the blood supply even under the magnification that we so frequently use. The nerve roots of the cauda equina (intrathecal) are frequently swollen by passive congestion because the drainage to the extradural veins is blocked . . .from the herniated nucleus. Passive congestion alone does not constitute inflammation."

Investigation 4: Bogduk summarised, "Authors . . .have argued by inference that this (inflammation) must be the pathology they treat with epidural steroids. However, no clinical studies have demonstrated how inflammatory radiculopathies are distinguished from noninflammatory radiculopathies before treatment with epidural steroids."

Investigation 5: Nelson and Landau at the Thomas Jefferson Univ. Medical College write:
"Intraspinal steroid therapy is not effective therapy for back pain or radicular syndromes because steroid formulations, placebos, and sham injections have similar outcomes."

This type of information is consistent across the medical literature ... no operative descriptions of nerve roots showing capillary dilatation, no biopsy reports demonstrating leukocyte infiltration or other cellular elements one would expect to find with an on-going inflammatory process. In addition, I can find no necropsy reports that support the inflammatory assumptions.

There are, however, reasonable explanations for the transient improvements seen following pudendal blocks containing steroids, as well as explanations for the post injection pain exacerbations. When methylprednisolone acetate (MPA), a common steroid used in injections, was applied to the plantar nerve of a rat, there was an immediate blockade of unmyelinated nociceptive C fibers that cleared when the MPA was removed. Transitory amelioration of symptoms in a patient post injection can also be explained by a chemical blockade along with destruction of C fiber axons and nerve terminals by the polyethelene glycol and the benzyl alcohol contained in several steroid formulations. It is reasonable to speculate that when one receives a CT guided steroid/xylocaine mix into the area of the pudendal nerve at Alcocks, the effects of xylocaine are immediate but last no longer than a few hours, but the blockade induced by the steroid and attendant preservatives prolongs the already existing state of analgesia for additional hours, until both the xylocaine first and associated mix last are then metabolized. Leaving ... a nerve with chemical injury to nociceptive fibers, and thus the flare.

Certain conclusions can be drawn with evidence based certitude:
1. If pudendal neuropathy follows other entrapment models, and we have no reason to think it doesn't, then the use of steroids for therapeutic purposes is not effective, and not without risks.

2. Since there is no evidence to justify steroid injections into the region of Alcocks, no limitations should be imposed with respect to beginning physical therapy following CT guided nerve block. A patient's pain and tolerance should be the limiting factors.

3. Pudendal block with a steroid mix may result in increased pain, early or late. There may also be serious complications including permanent neurological deficits.

4. Patients should be informed that there is no evidence, in theory or in practice, that a pudendal block can provide permanent relief of pain.

 

VII. On the processes involved in pain

 

          A. The mechanism of central sensitization

 

Once when we were diving off Discovery Bay in Jamaica, my husband took a sea spider, cut it into pieces, and dropped it on the side of a coral reef. Almost instantaneously, as though an alarm had sounded, a vast array of multi-colored fish appeared, most of them emerging from various holes and indentions in the reef. We watched as they all took turns at the spider carcass, and then, when all the tissue had been consumed, the fish disappeared nearly as rapidly as they had appeared. It is this type of activity that plays a major role, if not the major role, in the explanation of why many experience significant analgesia following post PNE decompression surgery, only to soon again experience the lacerating, burning rectal, anal, labial, scrotal, perineal pain of neuropathy. Furthermore, while this type of swarming activity will only diminish pain in the presence of immediate tissue injury (surgery is a form of controlled injury and insult to tissue), and while it only allows direct explanation of why the immediate relief of pain is so transitory, it indirectly allows us to recognize that past suppositions regarding duration of post decompression pain to be incorrect. One thing is certain. Prolonged and pronounced pain in the months and even years following decompression must fit into the schematic previously presented, and therefore due to one or the other: (1) incorrect diagnosis, (2) incomplete decompression, or (3) central sensitization (this category includes both peripheral and central sensitization).

I would prefer to write a more technical discourse, explaining kappa opiate receptors, sodium channels in axons, as so forth, but that style of writing, and the accompanying content, has been discouraged in this forum. So here I will attempt to describe the basics in terms of the totality, and what it means to PNE sufferers with respect to surgery, post operative expectations, and the implications for additional testing.

Generally speaking, by the time one reaches the point of surgical decompression, pain has become the dominant feature of life, and fear of pain permeates most of one’s choices. Activities once taken for granted have now become impossible. Relationships with spouses, children, friends and co-workers suffer as well, for chronic pain predisposes to the same irritations it causes, as well as to a whole host of emotional liabilities. Well described on this forum are experiences that mimic mine, trips to numerous physicians, unnecessary surgeries, the trials and failures of a myriad different drugs. So that when, by whatever means ... forum, physician, therapist, or word of mouth ... PNE is suggested, expectations are raised and hope becomes real. Despite the controversy surrounding pudendal neuropathy and entrapment, and despite the significant probability that you might remain unchanged or worse following surgery, you have finally found some possibility of remedy. So, like the end stage cancer patient who travels to Mexico for treatment with a drug found ineffective and not available in the States, you wage your last bet on this diagnosis. Yes, your pain is, or was at the beginning, worse with sitting. Yes, you obtained temporary relief with pudendal block, although you recognize that many structures are innervated by this nerve and that a disease process affecting any one of them could be responsible for your pain. The bottom line is that you have had enough, and regardless of odds, surgery provides a glimpse of the light at the end of the tunnel.

All this time your neurological clock is being reset. In many ways different, but in other ways similar to the neural pathways established from cocaine use, where a certain stimuli, a street corner where the drug was purchased, a face that resembles the dealer, even a smell somewhat akin to the burning of the drug, all evoke an intense neural reaction in the brain. But in chronic pain there is more than memory to evoke responses, more than established pathways to re-create misery. The switching equipment at all levels ... in the cortex, in the thalamus, at the cord level, and at the periphery ... becomes distorted in many ways, anatomically, biochemically, and functionally. Just like an old pre-electric typewriter, where pounding repetitively on the same key, faster and faster, will ultimately result in the key becoming frozen and stuck at the ribbon. So that while you no longer pound the key, or even touch it, the key remains depressed, and the pain continues.

Here it is more than just perception. In fact perception has some function but it is minor compared to modulation. In the nervous system, the higher centers usually rule. There are exceptions, like id and ego, reflex arcs, and bronchodilatation following fright, but the pain experience, especially the chronic one, is ruled from above. Chronic pain distorts the manner in which the nervous system responds to that pain, the manner in which it accepts the persisting message of pain from the injured tissue (pudendal nerve), even the manner in which the nerve attempts to inform the cord, and thereby the brain, of pain. And the mechanisms that are inherent to pain resolution and relief become distorted as well. One such mechanism are opiate receptors, and these are located throughout the brain and the spinal cord. They were not put where they are so as to be responsive to Oxycontin (although they are), but rather to be responsive to opiates that your body produces in response to pain (endorphins). In chronic pain one finds a significant reduction in the number of opiate receptors in the cord. In the case of a severed nerve almost all the cord opiate receptors disappear. Yet changes in number and activity of opiate receptors is just one of the many neural mechanisms that become involved in perpetuating pain long after the stimulus for pain has been removed.

Yet surgery produces transitory relief for many. As written above, surgery is controlled tissue injury. When the buttocks are incised, the gluteus teased apart and retracted, the sacrotuberous ligament divided, Alcock’s canal opened... all this tissue insult is perceived as harm by the immune system. The body’s response is immediate and usually vigorous.
There is an immediate inflammatory response whose purpose is to seal and heal damaged tissue, and to fight and destroy the hopefully small numbers of bacteria left behind from the procedure. Many different types of cells are enlisted to aid in this reconstructive process, and many different types of enzymes, hormones, catalysts, and other chemicals play a role as well. Very important is the fact that, almost like turning on a light switch, opiate receptors now become active in the pudendal nerve. Although they are hiding in the reef during all these months and years of chronic pain, the occasion of tissue damage from decompression surgery is the spider carcass prompting their activity. Endothelial cells lining small vessels begin making endorphins, which bind to these now active opiate receptors. Post operative medications, usually opiates, now also have peripheral receptors on the nerve with which to bind. The anti-nociceptive effects, both central and peripheral, are relief of pain. But as soon as the body determines repair of damage to be complete (a time span of 2 to 4 weeks), regardless of the state of entrapment, relieved or otherwise, peripheral opiate receptors in the axon terminals become inactive. If the entrapment was indeed the source of persistent pain, and was relieved by surgery, then a great deal of activity must take place before the central mechanisms can acknowledge the lack of pain stimuli and once again reset. Some wonder, in the case of pain of many years duration,
if the key can ever be completely unstuck. Many animals are being tortured at this very moment to try and answer that question for us.

 

            B. Activation of opiate receptors following surgical event


The events that occur in injured tissue as described in the post above are localized events. An injury to the left forearm does not provoke the activation of opiate receptors in the sciatic nerve innervating the leg. If otherwise, where injury of even the most modest degree were to provoke the whole body activation of opiate receptors on all peripheral nerves, as well as the transport of opiate receptors from the cord down along the axon to the nerve terminal, and in addition, the release of endorphins from a variety of circulating lymphocytes, macrophages, and the endothelial cell wall... then what would happen is that millions of Americans would be going around stabbing themselves on a very frequent basis ...just to enjoy the neuro-chemical response. In fact, a whole growth industry of devices for producing and maintaining peripheral and some central analgesia from self-injurious behavior would be on the stock exchange. No, one cannot expect a peripheral nerve's attempt to provide analgesia to an area superinfected from an ingrown toenail to then somehow radiate that analgesic response towards the scrotum or rectum. And even though the inherent analgesia provided by endorphins coupling with now active receptors in inflamed tissue does not remedy all the pain, it is remarkable to observe the course of an ingrown toenail, where for sometimes weeks tissue injury is occurring but there is no
perception of pain. Basically, the nociception from that tissue injury has been suppressed at the local level by the mechanism being discussed.

The application of an opoid agonist (like morphine) along nerves in uninjured tissue does not elicit any analgesic effect, reinforcing the concept that inflammation, such as that which follows surgical decompression, promotes accessibility and effective coupling of endorphins to opiate receptors in peripheral nerve endings. Granted, clinical relief is very seldom complete. One experiences nociceptive pain after a stabbing, or after a fracture, or following any type of surgery. But what is happening is that the body is doing its utmost to minimize that pain, so that we can only guess and suppose what pain might be like as a consequence of these injuries if peripheral mechanisms were absent. That is, unless you suffer from neuropathic pain, in which case you already have some idea, for these peripheral mechanisms are not available to address your suffering.

The actual mechanism by which opiate analgesic receptors become active in the pudendal nerve following decompression surgery might be of some interest. On the day of decompression surgery, and for perhaps the following 48 hours, the inflammatory response generated by surgery causes a disruption of the perineurium which is critical for the access of endorphins to the now activating opiate receptors on the pudendal nerve.
These already peripherally located receptors are mostly delta opiate receptors, and these almost immediately develop a high level of activity, for their numbers are not yet great, but the result is that they yield significant analgesic effects despite being, at least in those hours, only a small fraction of soon to be occupied receptors. At this same time the pudendal nerve sensory axons are delivering to the peripheral nerve terminals via axonal transport a sizable number of kappa and mu opiate receptors. This migration down the nerve occurs 2-3 days following decompression surgery. The sum of the activity of these receptors, in combining with both endorphins and exogenously administered analgesics, is the relief of pain. Interestingly, unlike opiate receptors in the central nervous system, peripheral receptors do not appear to develop tolerance to opiates, a fact that later could have broad clinical applications. Currently some parts of the pharmaceutical industry are looking at ways to perhaps synthetically activate peripheral receptors without the now-necessary tissue injury and inflammatory response. If this could be accomplished, as well as develop opiates with high affinities that could not cross the blood brain barrier, then the result of which would be the ability to provide analgesia to almost all injury in the body, including neuropathic pain, and without the attendant complications of addiction, respiratory depression and the otherwise that caution opiate prescribing.

            C. Nociceptive versus neuropathic pain

 

1.

 

In terms of classifying pain generators, they can be either nociceptive, neuropathic, psychogenic, or a combination of any two or three. For example, there is probably a neuropathic component to every nociceptive event. They can also be idiopathic, meaning there is no explanation of the mechanism involved. Lets begin here with an explanation of what each of these pain generators represent.

Suppose a carpenter driving a nail missed the nail entirely and instead the hammer stuck his finger. Or suppose a butcher was careless, applied too much force to the blade, and on cutting through the meat also cut into his finger. Both of these events would result in the release of phospholipids and other substances that would initiate a cascade of biochemical reactions termed a nociceptive response. Clinically, pain can be labeled "nociceptive" if it can be inferred that the pain is related to the degree of receptor stimulation by processes causing tissue injury. Nociceptive pain involves the normal activation of the nociceptive system by noxious stimuli. Nociception consists of four processes: transduction, transmission, perception, and modulation.

Normal somatosensory processing involves interaction between afferent systems activated by tissue injury and accompanying inflammation. The primary afferent system includes nociceptors (A-delta and C- fibers), signal processing in the dorsal horn of the spinal cord, ascending neural pathways, and thalamic and other specialized brain structures. Peripheral nociceptors are lightly myelinated or non-myelinated ends of primary afferent nociceptive (sensory neurons). Peripheal nociceptors have various response characteristics and they can be found in skin, muscle, joints, and some visceral tissues.

The nociceptive process begins with transduction (depolarization) at the peripheral nociceptors in response to noxious stimuli. Transmission is the process by which these stimuli proceed along primary afferent nociceptive axons to the spinal cord and then on to higher centers. Only when the impulses reach the brain are they intellectually recognized as pain. This is perception.

The ultimate perception of pain depends on both activity in this afferent system and its modulation at multiple levels of the nervous system. Pain modulation is determined by  activity in the endorphinergic system and other pain modulating systems. In the endorphinergic system, analgesia is mediated by the binding of endogenous opioid compounds to special subsets of receptors: mu, delta, and kappa. Endorphins are widely distributed and closely associated with systems known to regulate homeostasis, response to stress, and pain. In this very complex system, other neurotransmitters, such as serotonin and norepinephrine also play a role in the endogenous pain modulating system.

Nociceptive pain can be acute (short-lived, remitting) or persistent (long-lived, chronic), and may primarily involve injury to somatic or visceral tissues. Pain due to activation of somatic primary afferents is termed somatic pain and is typically localized and described as aching, squeezing, stabbing, or throbbing. Arthritis and metastatic bone pain are examples of somatic pain. Pain arising from stimulation of afferent receptors in the viscera is referred to as visceral pain. Visceral pain caused by obstruction of hollow viscus is poorly localized (because most viscera do not contain nociceptors) and is often described as cramping and gnawing, with a daily pattern of varying intensity. When organ capsules are involved, the pain may be described as sharp, stabbing or throbbing, descriptors similar to those associated with somatic pain. Nociceptive pain of any type can be referred and some referral patterns are clinically relevant. For example, injury to the hip joint may be referred to the knee and bile duct blockage may produce pain near the right shoulder blade. Pain is also distinguished by its location.

Nociceptive pain may involve acute or chronic inflammation. The physiology of inflammation is complex. In addition to an immune component, retrograde release of substances from C polymodal nociceptors also may be involved. This “neurogenic inflammation” involves the release of the endogenous pain facilitory chemical known as substance P, as well as serotonin, histamine, acetylcholine, and bradykinin. These substances activate and sensitize other nociceptors. Prostaglandins produced at the site of injury act to further enhance the nociceptive response to inflammation by lowering the threshold to noxious stimulation. Chronic inflammation with nociceptive stimulation may be the source of persistent pain.

From reading your latest posts I gather that you have found new employ. Suppose the hiring package included an immediate vacation for two, all expense paid, to the island of Jamaica. You found the island and the resort quite lovely, and spent your daytime hours swimming, diving, and wandering the lush tropical gardens. At night you would forgo the reggae and rum in order to prepare for upcoming intellectual duels with L.G. On one particularly sunny afternoon while your wife was resting you decided to roam, borrowing her sunglasses because yours had been lost. They were tight fitting and uncomfortable when you first put the sunglasses on, but you decided the relief from the glare of the midday sun outweighed the discomfort, so you basically ignored it and ventured about. Wandering through the gardens you came upon a man leaning against a palm tree and scribbling furiously on a legal pad. Finding this interesting, and being somewhat of an extrovert, you approach the man and initiate conversation. You find him a bit distracted, but otherwise friendly. The two of you talk about the different species of tropical fish seen on the reefs, the Phoenix Suns and their failure to block out for rebounds on the right, even discuss the short term effects of massive government debt, and how that applies to poverty in Jamaica. You are delighted to find someone who shares many of your views and interests, so you invite this new found acquaintance to join you and your wife for dinner. He says to you that he is grateful, but must decline, explaining that he has severe pain on sitting and eats standing, which therefore precludes social dining. "Perhaps you've heard of PNE?" you ask. "Oh, yes, he replies, "as well as the international forum, TIPNA. Actually I am a member." "And your member name?" you inquire. "Limey guy," he replies. You return to your room and your wife questioning many past assumptions. There, in the comfort of a semi-darkened, air conditioned place, you remove the sunglasses, thanking your wife and commenting on buying new ones. You sit down, pain free, to reflect on the past hour of conversations. You begin to rub the sides of your temporal scalp, still feeling the tight glasses there, although they now sit on the bed stand. This noxious stimuli is most likely neuropathic.

Neuropathic pain is the label applied to pain syndromes inferred to result from direct injury or dysfunction of the sensory axons in the peripheral or central nervous system (CNS). These changes may be caused by injury to either neural or non-neural tissues. Although neuropathic pain is influenced by ongoing tissue injury, there is an assumption that the fundamental mechanisms sustaining the pain have become independent of the initial injury or damage. Neuropathic pain has varied characteristics, but is frequently described as a continuous burning pain, shock-like or paresthetic. The pain may or may not be lacerating. Neuropathic pain syndromes may be associated with referred pain, allodynia (pain induced by non-noxious stimuli, e.g. light touch), hyperalgesia (increased response to a noxious stimuli), or hyperpathia (exaggerated responses to painful stimuli, with continuing sensation of pain after the stimulation has ceased).
Neuropathic pain syndromes can be subclassified according to broad sets of inferred mechanisms. Some neuropathic pain syndromes are presumed to involve a predominating peripheral generator (e.g. compressive or entrapment neuropathies, plexopathies, radiculopathies and polyneuropathies). Other syndromes appear to depend on processes that reside in the spinal cord, brain or both (e.g., pain due to spinal cord injury or post-stroke pain)

Some of the neurophysiologic and neuroanatomic changes that may occur in peripherally-generated neuropathic pain are understood. Injury to peripheral neural axons can result in abnormal nerve regeneration in the weeks to months following injury. The damaged axon may grow multiple nerve sprouts, some of which form neuromas. These nerve sprouts, including those forming neuromas, can generate spontaneous activity, which peaks in intensity several weeks after injury. Unlike normal axons, these structures are more sensitive to physical distention, which is clinically associated with tenderness and the appearance of Tinel’s sign (i.e., sensation of tingling or “pins and needles” when the area is tapped or manipulated). After a period of time, atypical connections may develop between nerve sprouts or demyelinated axons in the region of the nerve damage, permitting “cross-talk” between somatic or sympathetic efferent nerves and nociceptors. Dorsal root fibers may also sprout following injury to peripheral nerves. The specific changes associated with centrally-generated pain syndromes are not known.

Suppose that in England the universal response of the populace to even the most minor of injuries (superficial scratch) was to scream and cry, to summon an ambulance, to be hospitalized, to be given workers compensation for 6 months, and to be given opiates in large doses for no less than a month. Socioeconomic conditioning, local expectations of gender, exposure to similar illness in others... these and many other factors influence response to and interpretation of pain.

The patient’s psychological state contributes significantly to pain perception and associated suffering. Physicians and other healthcare personnel need to maintain a willingness to believe the patient’s self-report of pain and to investigate its cause; concurrently, the presence of anxiety, depression, or other affective or psychological disorders should also be assessed so that appropriate supportive care and/or pharmacotherapy can be instituted. In some cases, evidence that the pain itself is sustained by psychological factors can be inferred. This phenomenon is known generically as “psychogenic” pain. Specific diagnoses, as described in the Diagnostic and Statistical Manual of the American Psychiatric Association can also be applied. When reasonable inferences about the sustaining pathophysiology of a pain syndrome cannot be made, it is best to label the pain as “idiopathic.”

In medicine questions are like revolutions... once one gets started it is difficult to find an end. But I believe we are well on our way to understand pain and the mechanisms which produce it. There are a lot of research issues that are hovering around just outside the realm of PNE. For example:

"PUDENDAL URETHRAL SENSORY NERVE STIMULATION FOR BLADDER EVACUATION
Another emerging application of pudendal nerve stimulation is electrical activation of urethral sensory nerve fibers to elicit bladder contraction and voiding (19). This approach is based on the augmenting reflex whereby fluid flow in the urethra initiates bladder contractions in the quiescent bladder and augments ongoing contractions in the active bladder (20,21). Pre-clinical studies in animals demonstrated that bladder contractions may be generated by electrical stimulation of the urethral sensory branch of the pudendal nerve (19,22), and that the urethro-bladder reflex was preserved following acute spinal transection (19-22). The excitatory urethro-bladder reflex was found to be strongly state-dependent (19,23). When the bladder is at low volumes, electrical stimulation of the urethral sensory branch does not cause excitation of the bladder but evokes an increase in urethral sphincter activity. When the bladder is at higher volumes, electrical stimulation of the urethral sensory branch of the pudendal nerve leads to excitation of the bladder (24) and micturition-like increases in bladder pressure (19,22), and prolonged stimulation leads to long-term augmentation of the urethro-bladder reflex (25). These results challenge the traditional view that coordinated voiding requires intact spinal-brainstem-spinal reflex loops (2) and suggest that the inter-neuronal circuitry required to elicit coordinated bladder evacuation exists within the spinal cord. This may provide a new approach to restoration of bladder evacuation following SCI."

"DEMYELINATING NEUROPATHY AND NEUROPATHIC PAIN IN PERIAXIN-DEFICIENT MICE.

Brophy P.J., Gillespie C.S., Griffiths I.R.(1), Ure J.(2), Cottrell D.F., Fleetwood-Walker S.M., Sherman D.L., Smith A.(2) University of Edinburgh, Edinburgh EH9 lQH, UK, (1)University of Glasgow, Glasgow G61 IQH, UK, (2)University of Edinburgh EH9 3JQ, UK.

The Periaxin gene is specifically expressed in myelinating Schwann cells. Mice lacking a functional Periaxin gene develop a neuropathy characterized by focal hypermyelination and segmental demyelination in the peripheral nervous system (PNS). The mice display allodynia, a painful response to normally innocuous stimuli, at an early age and by six to eight months they exhibit severe functional impairment. All peripheral myelinated nerves examined are severely affected. We conclude that the periaxins play an essential a role in stabilizing the interaction of the axon with myelin-forming Schwann cells. We also suggest that these animals will be useful models for studying late-onset forms of demyelinating neuropathy, particularly where neuropathic pain is associated with demyelination."

And then there are those recent articles which suggest what we have already said in other posts in this forum. In this case that entrapment might not be localized to a single site, but that indeed, the underlying mechanism of injury to tissue may involve not only different sites, but may involve different tissues at the same site.

"SWELLING DISTAL IN THE FOREARM AND PAINFUL MEDIAN NERVE COMPRESSION
Dammers J., Veering M.M. Department of Neurology, Medical Centre Alkmaar, The Netherlands
In Cambridge ('97) we presented the results of our double blind placebo controlled study on corticosteroid injection in carpal tunnel syndrome. 1) Our results (50% responders after one year) were better than generally met. We think that our good result is due to the fact that we give an injection 4 cm proximal to the carpal tunnel. In 66% of the cases we observe a swelling on the volar side of the forearm, proximal to the carpal tunnel. After one or two injections we see this swelling diminish. This is due to the fact that corticosteroids have lipolytic properties. Echography and MRI-imaging of these swellings do not show any other structures than subcutaneus fat and muscle. Local swelling after Colles fracture, ganglion, arthritis and tendonitis are well known causes of CTS. Apart from these, two other types of local swelling (fat and muscle) do exist, but no mention of these is made in literature. We studied 200 persons, patients and accompanying persons visiting our out-patient department, on the incidence of these local swellings. This can be an fatty structure subcutaneous, on the volar side of the distal forearm. More often we see a swelling which is predominantly caused by pronator quadratus muscle. We consider this a swelling when it protrudes above the level of the tendons of the flexor muscles. This swelling disappears by forcefully closing of the fist, by pressure of the tendons, becoming a swelling again when the person pronates the fist against resistance. We asked 200 persons between 20 and 90 years (mean age 53, 82 male, 118 female) to have their forearm inspected. We tried to discover by history and neurological examination if they suffered CTS. This was the case in 33 women, 11 men. (p<0.015). Pronator quadratus muscle hypertrophia was seen in 70.29%. 54 Female and 16 male (p<0.001). Correlation of pronator muscle hypertrophia and CTS was highly significant. Fatty swellings subcutaneous were met in 12 cases, correlation with CTS was high, (p<0.09). Women do have more often than man local swelling. This often leads to CTS, especially in women because of their smaller canals and menopausal accumulation of fat. A narrow carpal tunnel and subcutaneous fat and muscle cause distal median nerve compression. In 95% of the cases it positively reacts on an injection of corticosteroids, the way we inject it and gives long-lasting results of about 50% after a year. Conclusion: painful distal median nerve compression is not only caused by a narrow tunnel. Beside well known local swellings, pronator quadratus muscle hypertrophia and/or local fat are pathogenic as well. Lipolysis by locally applied steroids is probably the reason injections give longstanding results in about 50% of "CTS" patients
1. Dammers J, Prins J, Veering MM, Vermeulen M. Corticosteroids close to the carpal tunnel. A double blind study with encouraging outcome. Abstract Peripheral Nerve Society Meeting. Cambridge, UK, 1997."

In fairness, I think it is important to mention that the perfect results previously presented in median nerve surgery probably had something to do with patient selection. This is not to say patients were turned down, but is to say that most patients with CTS had not been symptomatic for years and years. Also, many were symptomatic only at night or with certain activities. In addition, many obtained partial or complete relief of pain with upper extremity splinting. Most of us refrain from activities that produce severe pain, although with PNE it is almost impossible to not sit at sometime during the day

NEUROPATHIC PAIN AFTER CCI IS PERMANENTLY REVERSED BY GABA THERAPY
Eaton M.J., Karmally S., Martinez M.A., Plunkett J.A., Cejas P., Lopez T. The Miami Project to Cure Paralysis, University of Miami School of Medicine, Miami, FL 33136
Little is known about the endogenous spinal mechanisms of the altered sensory behaviors related to unilateral chronic constriction injury (CCI) of the sciatic nerve and the development of neuropathic pain. Cellular therapy that is able to reverse chronic pain after CCI, also reverses the loss of GABA in the endogenous GABA interneurons of the dorsal horn. The neuronal cell line, 33G120.17, transfected with rat GAD67 cDNA (glutamate decarboxylase for GABA synthesis) was used as a subarachnoid graft in a model of chronic neuropathic pain induced by CCI. When 33G10.17 cells were transplanted one week after CCI, they survived greater than seven weeks on the pia matter around the spinal cord and synthesized GABA. Furthermore, the tactile and cold allodynia and tactile and thermal hyperalgesia induced by CCI was significantly reduced during the two to seven week period after grafts of 33G10.17 cells. The maximal effect on chronic pain behaviors with the GABAergic grafts occurred two to three weeks after transplantation. To investigate whether the induction of chronic neuropathic pain is sensitive to GABA levels, a single dose of intrathecal (IT) GABA was substituted for cells grafts, one week after CCI. Both thermal and tactile sensory behaviors were potently reversed for at least 4-5 weeks after IT GABA. These data suggest that altered spinal GABA levels contribute to the induction and maintenance of chronic neuropathic pain and that cell therapy can prevent or relieve that pain. This work was supported by the Miami Project; NIH #36438-02; and The State of Florida.

Here we have an approach that in the near future might have important applications to those with persistent neuropathic pain following decompression.

We have research that suggests axons delivering a pain stimuli along the pudendal nerve actually may come off the nerve at a point entirely different than what was previously supposed.

"CUTANEOUS BRANCHING STRUCTURE OF PHYSIOLOGICALLY IDENTIFIED NOCICEPTORS
Meyer R.A., Peng Y.B., Ringkamp M., Campbell J.N. Johns Hopkins School of Medicine, Baltimore, MD, USA
Little is known about the branching structure of physiologically identified cutaneous nociceptors. We used electrophysiological. techniques to locate the position of the branch point where daughter fibers innervating two separate locations in the receptive field join the parent axon. Single-fiber recording techniques were used to investigate 32 Ad and 10 C-fiber nociceptors innervating the hairy skin of the monkey. Electrodes for transcutaneous stimulation were fixed at two separate locations inside the receptive field. Distinct steps in latency of the recorded action potential (AP) were observed as the electrical stimulus intensity increased in the receptive field indicating discrete sites for AP initiation. The number of discrete latencies at each stimulation location ranged from 1 to 9 for the Ad fibers and 2 to 6 for the C fibers. The mean size of the latency step was larger in the Ad fibers (9.9 ± 1.0 ms) than in the C fibers (4.0 ± 1.0 ms). Collision experiments were performed to determine the connectivity between one AP initiation site from each location in the receptive field. To correct for changes in electrical excitability following AP propagation, collision experiments between the two skin locations and between each skin location and a nerve trunk electrode were necessary. For nine branch points from 7 Ad fibers, the mean distance between the skin and the branch point was 54 ± 10 mm. For one C-fiber, the branch point was 94 mm from the skin. These results indicate that some nociceptive afferents branch quite proximal to their peripheral receptive field. Furthermore, these results demonstrate that collision techniques can be used to study the functional anatomy of identified nociceptive afferent terminals."

This would support my prior contention that careful sensory testing , mapping and documentation prior to and following diagnostic blocks might have important clinical implications both to that individual patient as well as to the entire class of those with PNE.

Finally for those who have stayed with this discussion, I believe not only that we are making progress, but that a remedy can be found for all. It is in this area that the forum and its members could have their greatest utility. I have written about, and all members know first-hand, how difficult it is to find a doctor... any doctor... who has even heard of PNE. Let's suppose that a suffering person has learned, through intense investigation on the internet of perineal pain, that PNE as a syndrome does exist. That person then goes back to the same doctor who has treated this person's painful-sitting unsuccessfully for years, and presents the physician with a copy of symptoms taken from the tipna website. Suppose this doctor is not so hurried, so uncaring, so money-conscious, so lacking in intellectual curiosity that he reads the material and begins his own search. He queries a search engine to look up PNE on emedicine, and finds no such entry. He then queries "chronic pelvic pain", to find:
Neurologic disorders
Neuralgia/cutaneous nerve entrapment (surgical scar in the lower part of the abdomen; usually iliohypogastric, ilioinguinal, genitofemoral, and lateral femoral cutaneous nerves)
Shingles (herpes zoster infection)
Degenerative joint disease
Disk herniation
Spondylosis
Abdominal epilepsy
Abdominal migraine
Neoplasia of spinal cord or sacral nerve
but there is no mention of the pudendal nerve or its possible entrapment. It is then likely this patient's physician will turn a blind eye to the literature brought in by the patient, and proceed along the same course that has endured no relief.

I have published on many occasions, as have my children, and there are members of this forum who have writing skills and knowledge superior to mine. If these talents were harnessed in a different topic section on this site, so that we could begin to compose a document of sufficient clarity and information to warrant publication on emedicine, I wage a result would be to create an index of suspicion for PNE all across our world.
The mechanism by which the forum would undertake to do so could be debated, but I suggest we start with history of PNE, and proceed, as does every other emedicine summary, through causes, testing and so forth until we reach a section on treatment.
A member or members who are physicians (Karen for instance) could edit/monitor this topic. As information regarding the history of PNE was assimilated, they would be responsible for its organization and summary. The summation would be presented to the forum where members would have opportunity to make amendments, which could be voted upon. Then the history section could be voted upon, and having then completed
one section of our proposed publication, we could move on to the next. Finally we would not only have a document rich in information and perspective, this would represent, for the first time in history, an occasion where sufferers, both past and present, were able to affect a change in the medical literature. A number of journals would consider it. In addition, the forum’s document could be simplified so that it could also be made available to non-medical publications. The simple novelty of its creation and the quality of presentation would inspire interest from any number of national health and home based magazines. I recognize that some may feel the mere presence of the TIPNA site is sufficient, but I call to their attention the plight of many older and elderly, who do not have use of a computer, who do know understand search engines and the ease of use, who could not fathom what topic to enter if computer access was available, and if fortunate enough to have it done for them, could not understood what they read. All they really understand is pain, and for this they depend on their doctor, who frequently lets them down.

 

2.

 

I have doubts about my ability, or anyone's, to produce an explanation of what takes place in the generation of pain, and therefore how to affect it, in a writing style that would be acceptable to all. I think it is important that an explanation of these concepts be available to those who wonder. But the terminology involved can be simplified but so far. For example, some have supposed on this forum that the injury to their pudendal nerve is not entrapment or compression but rather "pinching". I have attempted to explain that regardless of mode, the response of the nerve to injury can be graded, and that with each increase in severity of pathology the nervous system reacts in progressively different ways. Most nerve entrapment syndromes, the pudendal included, result from long standing injury to the nerve as it passes through an osseoligamentous tunnel and the compression is usually between bony surfaces and ligamentous ones.


In almost all cases of entrapment at least one side of the compressive surface is mobile, so that the long standing injury to the nerve involves either a repetitive "slap" against the nerve or a "rubbing" type abrasion against sharp or tight edges. This partially explains the symptomatic benefit of standing, that is, until nerve damage reaches a point that standing is of no benefit. But whatever the mechanism, the changes that take place in the nerve are progressive along a pattern that we can identify... things like edema, structural alterations in the myelin sheath, ischemic changes from disruption of capillary blood circulation, and so forth. So regardless of mechanism of injury we rate damage to the nerve by the pathologic changes that are taking place in it because of the injury. We do that because that allows us to predict what the nerve's response is going to be. Or more accurately, what the nervous system's response is going to be. If recent research has taught us anything at all, it is that peripheral and central neural mechanisms are not mutually exclusive. In fact, long standing injury to a peripheral nerve like the pudendal is associated with an extensive amount of interaction between both the central and the peripheral nervous system that reinforce the pathology involved and contribute to your state of chronic pain.

Most of the people who use this forum either have or have had neuropathic pain. I doubt many of your doctors can describe the fail-safe mechanisms that perpetuate neuropathic pain, nor do they have a clue as to peripheral and central hyperexcitability. Hopefully just your use of the word "nociceptive" during your office visit with your provider is likely to generate additional thought in that provider's mind, as well as some inclination to review the literature.

Pain as we evolved served and continues to serve a useful purpose. It is a normal reaction of the sensory system to noxious stimuli and it alerts the individual of possible or actual damage to the body. This highly evolved protective function ... making us aware of injury or disease ....usually remits when the illness is cured and healing is complete. The pain that is present when tissue is injured is called nociceptive pain, and this pain is characterized by the peripheral sensitization of nociceptors. Nocicepetors are like a sensory organ located at the very tips of sensory axons. Because these axons are conveying information from the periphery to the central nervous system, they are termed afferent axons. Primary afferent nociceptors are carrying the message of tissue injury from the site of injury to the spinal cord.


If your skin suffered second degree sunburn, the primary afferent nociceptors, the sensory axons working to provide an alert system to the body in that area.... these nociceptors would be sensitized. They would exhibit an increased impulse frequency to the same stimulus, producing hyperalgesia, which is defined as an increased pain response to a stimuli. Rub you hand across your second degree sunburn and you will rapidly recognize that it does not feel the same as it did before the burn. The pain you now feel from a normal stimuli, rubbing your hand across skin, is hyperalgesia.  Unfortunately nociception can persist long after tissue injury, long after the body's need to be signaled and warned, and long after it has any useful function.

 

 

            D. The four horsemen of pain

 

Thus far I have attempted to describe in some detail the course that the pudendal nerve takes as it leaves the spinal cord and sacral plexus and travels towards its motor and sensory destinations. I have written about possible sites of entrapment along this course, the changes in the nerve itself that entrapment might bring, how these changes would affect the PNMLT, the possibility of picking up the site of entrapment on MR neurography, and how tissue injury, in the form of decompression surgery, causes opiate receptors on the pudendal nerve's sensory terminals to become active. I have written that the recurrence of neuropathic pain shortly following decompression surgery is not the result of re-entrapment but rather a continuum of the original pain state, albeit briefly modified by the analgesic properties inherent to peripheral nerves during inflammation. Mostly this recurrence is due to ineffective modulation and unregulated transduction. In order to fully understand these events, and to understand the approach we need to take with respect to medication, one must have a basic appreciation of the four physiologic processes that together cause you to hurt or not to hurt. Each of these processes can be pharmacologically manipulated, and the manner in which that is done, and the approach that can be successful, is the subject of this and future discussion.

These four processes are the 4 horsemen of pain: (1) TRANSDUCTION is the translation of physical energy (noxious stimuli) into electric activity at the peripheral nociceptor.
(2) TRANSMISSION is the propagation of nerve impulses through the nervous system. (3) MODULATION occurs through the descending endogenous analgesic systems, which modify nociceptive transmission. These endogenous systems (opioid, serotonergic and noradrenergic) modulate nociception through inhibition of the spinal dorsal horn (T) cells. (4) PERCEPTION is the final process resulting from successful transduction, transmission and modulation and integration of thalamocortical, reticular and limbic function to produce the final conscious subjective and emotional experience of pain.

This is what I propose. That we view with favor the models set forth for effective chemotherapy in some malignancies, as has been done with antiviral therapy for HIV infected patients, as we do in addressing other infectious diseases like tuberculosis, and like we do everywhere when we find current strategies lacking. That instead of attacking the cancer cell only at its cell wall, we devise treatments that attack it anywhere we can. That instead of approaching TB with an antibiotic that works some of the time, we use combinations of antibiotics whose sum effect is to work all of the time. That is where we should be with neuropathic pain, but as yet no such path has been marked.

I say we should begin to mark such a path. That we take each stage in the pain process, understand it as fully as the research allows, and develop a multi-drug strategy which attacks pain at each level simultaneously, thereby increasing our chances of reversing hyperalgesia and enhancing our opportunity for relief. To do so will require a knowledge of each stage of the pain process as well as an understanding of the mechanism of action of each drug we add to our armamentarium. What I propose to do is describe each of these processes in a separate post or topic, including in that post each medication known to alter the pathologies involved. Then we shall propose calculated analgesia, where medications are considered in such a manner so as to balance our approach to pain.

We are certain that following pudendal nerve injury sensitization of central neurons takes place with alterations in their firing characteristics, and this is something we must do something about. We know that when the pudendal nerve endures prolonged entrapment, the resultant repetitive impulses fired to the cord causes the nerves in that area to undergo synaptic modifications, with changes in their receptive fields. This is something we must address if the problem is going to be fixed. We know that chronic pain causes a marked depletion in the neurotransmitters within the inhibitory descending pain pathways (whose function are to reduce pain), so that complete relief of pain will never occur until these pathways regain their regulatory activity. For chronic pain and pudendal neuropathy is attributable to the malfunctioning ... to the pathological malfunctioning ... of a damaged nervous system at all of its levels.

What I wonder is this... if we do not drive the train together, who is going to drive it for us? Look about, search the literature. There are no recent relevant studies on PNE. And in most cases the pharmaceutical literature on chronic pain is nothing more than falsified data touting medications that destroy via addiction while using the subterfuge of pain relief. If one buys into that ploy they are never going to get well. But if one makes the effort to understand why they hurt, the same nervous system that causes pain may also give up the solution to wellness.

VI. On pharmaceuticals

 

          A. Valium and other benzodiazepams

 

1.

 

Valium is a member of the drug class benzodiazepam. It works to address your pain because benzodiazepam receptors are located on the alpha subunit of the GABA receptor on postsynaptic nerve endings within the spinal cord. As such, when this receptor is occupied by a benzodiazepam such as Valium, the chloride-channel gating effect of GABA is enhanced, so that the now increased chloride channel conductance within the cord axon leads to hyperpolarization of the cell and decreased (inhibition) transmission of the painful stimuli upward. Since transmission of noxious stimuli is thus delayed at the cord level, the signals reaching the cortex (where perception of pain creates the real event for your consciousness) do not carry the same effect they would carry if not delayed.

 

2.

 

As we have discussed, benzodiazepam agonists (Valium, Tranxene) and other agonist at the benzodiazepam site achieve their therapeutic effects by enhancing the actions of the inhibitory neurotransmitter gamma-aminobutyric acid (GABA) at its receptor. The benzodiazepams have a binding site on the GABA receptor, which forms a channel through the membrane and opens and closes to control chloride flow into the cell. When Valium or Tranxene sits on this receptor site, GABA produces a more rapid pulsatile opening of the channel, and the flow of chloride is increased. The central GABA receptor, known as the GABAA receptor, consists of at least four subunits; three of these—alpha, beta, and gamma—each contains three to six variants. The multiplicity of variants suggests that there are a number of different GABA receptors, but the subunit makeup of the native receptor has not yet been determined.

Two GABA receptors have been identified anatomically and pharmacologically. These receptors—variably called type I and type II, benzodiazepine I and benzodiazepine II, or omega I and omega II—are located throughout much of the central nervous system (CNS). The omega I site has been associated with the alpha-1 subunit, whereas the omega II site appears to be heterogeneous, located on receptors with alpha-2, alpha-3, and alpha-5 subunits. The ratio of omega I to omega II binding sites is greater in the cerebellar and cerebral cortices, whereas omega II sites predominate in the spinal cord. Therefore these are the sites that should hold our attention. Unfortunately, pharmacological studies indicate that the 1,4-benzodiazepams bind with relative nonselectivity to both omega I and omega II sites. The triazolobenzodiazepams tend to have a greater affinity for omega I and II receptors than do the other benzos, and they are more potent. Zopiclone, despite its unusual chemical structure, has a binding profile much like that of the classic benzos. Zolpidem, however, binds with much greater affinity to the omega I site and there is evidence that abecarnil may have some specificity for the omega I site as well, therefore these benzos are of less interest to us.

Most of the benzodiazepams currently available for therapeutic use are considered to be full agonists at the benzodiazepam site. By definition a full benzodiazepam agonist is a drug that produces the maximum effect in all biological assays, although it occupies less than the maximum number of benzodiazepam receptors. Since we are looking for maximal effect in omega II sites, even with unoccupied receptors, we need a full agonist. Recently, partial agonists at the benzodiazepam site have been identified; a partial benzodiazepam agonist is a drug that produces less effect than a full agonist when it occupies the same number of benzodiazepam receptors. Benzodiazepam antagonists are drugs with affinity for the benzodiazepam modulatory site but no efficacy. A unique aspect of the benzodiazepam-related modulatory site on the GABAA receptor is that it is bi-directional; there are agents that bind here that decrease the effects of GABA at its site on this receptor, and thus have effects opposite to those of classical benzodiazepams. Confused? As we progress further up the cord, to the midbrain and the cortex, things get even more confusing.

 

3.

 

Just like with modification of pain, any muscle relaxant effect would be at the cord or cortex level via the mechanism given above. Muscles themselves do not respond directly to medications that supposedly relax them. The only direct manner in which to affect muscle activity is to deprive the muscle of substrate (oxygen, glucose, etc.), or to amend the neuromuscular junction, where acetylcholine alone is the neurotransmitter. What Valium does is to reduce the excitability of dorsal horn cells in the spinal cord, probably depress excitability in the thalamus, and depress excitability at different sites throughout the cortex. The muscle is not truly relaxed, nor is it changed in any way from Valium. The commands that your brain gives to muscle are relaxed, at least until they reach the point where the efferent axon leaves the spinal cord. From that point on there is no effect from the benzodiazepams, or from muscle relaxants such as Baclofen or Soma.

There is clinical relevance. If we could determine that minimum dosing of benzodiazepams would result in occupation of alpha subunits without the bothersome central sedation, then a long acting benzo (minus the cocktail effect of rapid onset) would be one piece in our model of maximum analgesia for neuropathic pain. We need to affect modulation of central processing of pain with at least three medications with differing mechanisms of action. The best benzo might be one of those.

 

4.

 

Benzodiazepam Comparative Time Half-life
dose to peak
plasma
level

------------------------------------------------------------------------------------

Alprazolam .5 1 - 2 9 - 20
Bromazepam 3.0 .5 - 4 8 - 30
Chlordiazepoxide 25 1 - 4 24 - 100
Clonazepam .25 1 - 4 19 - 60
Clorazepate 10 variable 1.3 - 120 * (unreliable absorption)
Diazepam 5 1 - 2 30 - 200 *
Estazolam 1 .5 - .6 8 - 24
Flurazepam 15 .5 - 1 40 - 250 *
Halazepam 40 1 - 3 30 - 96 *
Ketazolam 7.5 3.2 30 - 200
Lorazepam 1 2 4 8 - 24
Nitrazepam 2.5 .5 - 7 15 - 48
Oxazepam 15 2 - 3 3 - 25
Prazepam 10 2.5 - 6 30 - 100
Quazepam 7.5 1.5 39 - 120 *
Temazepam 10 2.5 3 - 25
Triazolam .25 1 - 2 1.5 - 5

* metabolites

Karen, if we were looking only at half-life, that might would be the case. But as you recognize, 30 to 200 hours is much too variable a period of time. We need control, and Valium (diazepam) does not allow it. In addition, we need a benzo with a slow and gradual onset of action. Valium is enjoyed because of its cocktail effect, that is, most of the drug hits fairly quickly. We are looking for receptor site occupancy in the cord, not the cerebral events.

The occasional pre-sedation is not harmful in the least, nor does it trigger reward pathways. I apologize for misleading. Frequent use over a period of a few weeks is the problem, enhancing dopaminergic pleasure responses that are quite separate from the feeling of analgesia.

 

            B. Indocid suppositories


Yogi, famous Yankee catcher and word artist, said: in theory there is no difference between theory and practice, but in practice there is. If an Indocid suppository were to provide relief from chronic perineal or pelvic pain, then in theory (and probably practice) that pain would not be neuropathic. Indocid is indocin, a non selective non-steroidal antiinflammatory drug in the same class with Motrin. It acts through inhibition of the cyclooxygenase enzymes that produce the inflammatory prostaglandins. These types of drugs work on nociceptive pain, but not on neuropathic pain. If someone obtained persistent and substantial relief from the NSAIDs, regardless of mode of insertion (oral, rectal, intra vaginal, intra urethral, intra nasal, whatever), then the index of suspicion with respect to PNE could be lowered.

 

To summarize: There are 5 generators of pain... nociceptive, neuropathic, psychogenic, mixed, or idiopathic. A traumatic event is primarily nociceptive. Pain that persists is most likely neuropathic, though could be psychogenic, nociceptive or a combination of all three. Since we know that the action of all the NSAIDs, including Indocin, is to inhibit the action of the COX (cyclooxygenase)enzyme that helps initiate and propagate the nociceptive response, we can conclude that if analgesia is obtained from these medications, then the generator is nociceptive. NSAIDs (like Indocid) have no theoritical basis for relieving pain when the generator is neuropathic. If the generator is psychogenic, any analgesic response to NSAIDs would be a placebo one. As far as the B & O, opium provides analgesia to different degrees regardless of pain generator, so its utility in ruling in or out a specific pain generator is nil.

 

            C. Narcotic analgesics

 

1.

 

Strategies in terms of medication, especially when those medications have the ability to be so disruptive, or to cause behavior changes, or to put one out on a highway where the medication affected inability to operate a motor vehicle places others at risk.... these strategies for medication selection need to be evidence based. The following letter to the state board highlights that need, and was written by one of my children.

"Decision making in the practice of medicine should not be based on unfounded dogma. Theories, however well-intentioned, simply do not determine outcomes. The happenings set in motion by a particular unproven plan of care will rarely be those narrowly intended, are intrinsically unpredictable, and will usually ramify far beyond the anticipation of the instigator. This appears to be the case with respect to chronic opiate use in treating chronic non-malignant pain.

The use of opiates in chronic non-malignant pain is profoundly messy, and the practice of medicine suffers from no more controversial an issue. The last ten years
have been one of opioid zealotry, with the liberalization of prescribing opiates quickly moving from the realm of scientific discourse into one emotionally charged and highly politicized. Even today most scientific studies in this area are rated poor by design and measurement of outcomes, and the majority receive funding from a pharmaceutical industry that profits indirectly from study results. Until there are well designed randomized double blinded studies available for review by the medical community, the use of opiates to treat chronic benign pain remains unproved.

Few would argue that opiates are powerful and effective analgesics. Indisputable is the fact that they are effective in acute traumatic and post-operative pain states that are primarily nociceptive. The failure to address pain in these circumstances can have multiple negative effects on patients, delaying recovery as well as depressing immune function. It is equally clear that aggressive management of pain is appropriate in terminal conditions such as cancer, and that ineffective management can be considered inhumane. What remains at issue is whether or not these drugs are appropriate, effective, and commensurate with functional recovery and rehabilitation in chronic non-terminal conditions. There are basic clinical questions that surround the long term use of these medications in benign conditions, and little to no quality unbiased science to provide answers.

A few randomized and controlled studies are available to give guidance on the short term use of opiates, but there are no published studies of sufficient length to be clinically relevant to the question of long-term, perhaps even lifetime, opiate use. At present what
is considered appropriate research outcomes is the reflected biases of study designers. Rehabilitation oriented clinicians tend to emphasize objective functional outcomes,
whereas medication oriented physicians tend towards subjective, palliative outcomes.
I have written to the Board on several occasions stressing that a physician's reluctance to employ opiates in treating chronic benign pain should not be considered "under-treatment", and that such caution not represent "lack of knowledge". Those of us who spend our evenings searching the literature for better ways to care for our patients
and find no valid data to support the current opiate fad are probably far more knowledgeable than the majority of providers who prescribe opiates for any and all chronic benign pain.

Early in medical school we learn that medicine is both an art and a science, an understanding daily reinforced with patient encounters. A small part of the art is the attention we focus while listening, the determinations we make by skillful exam, the comfort we give to the sick or dying with their knowledge that we will be there for
them and that we care. It is the science upon which we depend to make treatment decisions. That science can be qualified by its design, and what is considered the "best" science are well-designed, randomized, double-blind studies.

Unfortunately even the best science is subject to manipulation. Corporate needs affect study results and deeply shadows the validity of a substantial part of medical treatment research. I have enclosed a study from The American Journal of Psychiatry which should give pause in reviewing treatment options for psychiatric medication. The questionable validity of results, which suggests improper data management in randomized, double-blind studies procured by pharmaceutical interests, is not a phenomena isolated to psychiatry. Sworn testimony before the U.S. Senate in 2002 revealed that Purdue Pharma, the maker of Oxycontin, engaged in an extensive and sophisticated non-branded promotion of opiates to treat chronic non-malignant pain, that it sponsored thousands of seminars for physicians in which the benefits were unsubstantiated and overstated and the risks trivialized, that it used marketing data to determine which physicians would prescribe opioids most “liberally” and “least discriminately” and targeted these physicians, and that from 1996 to 2000 the use of other opioids grew 23% while Oxycontin prescriptions increased 1800% in the same period. Most of the current science and the contributions to the literature, the overwhelming majority rated poor to fair, has been funded by Purdue Pharma or Purdue Frederick, and/or the authors are employees of either.

Opioids are not a panacea for pain. Some studies indicate a lack of response in up to 38% of patients, even with liberal use. As the Board recognizes, one factor that has been shown to be a determinate of response is the generator of the pain, whether it is predominantly neuropathic or nociceptive. The animal literature provides persuasive evidence that opioids have little to no effect in certain neuropathic models, although there are exceptions. Likewise there is compelling evidence from human clinical research to suggest opioids are less effective in neuropathic conditions. Unfortunately most studies fail to differentiate between types of pain and lump a variety of painful conditions together. Moreover, studies that rely on outcomes by way of patient validation of pain through scoring depend on individual patient's response to pain. This response has been influenced in no small degree by social conditioning and expectations, as well as other factors. The only study in the past 5 years that has been rated better than fair in design (funded by Purdue Pharma and one author employed by them) looked at the difference between a long acting opiate and placebo during 6 weeks of therapy, and the numeric analogue pain score difference, ruled statistically significant, was 1.2 points (4.1 to 5.3 for placebo). There is even evidence that opioids may make certain pain states worse by causing hyperalgesia. Almost any physician has experienced the sadness of treating a terminal cancer patient on high dose narcotics and can remember the pain that even light touch could cause in areas of the patient's body spared the disease.

To date there are no studies of adequate quality or sufficient power to arrive at evidence based conclusions about the incidence and prevalence of psychological dependency, addiction and abuse in the chronic benign pain population. In fairness this is partially the result of a lack of uniform terminology... a situation recently remedied, at least in part, by definitions given by a consensus group (and adopted by the NCMB) to physical dependency, addiction, and pseudo-addiction. Notably absent from this effort, again reflecting bias, is a definition of psychological dependency. Psychological dependency is an emotional state of craving for a drug for its euphorigenic effects or to avoid negative effects associated with withdrawal. In some cases it may be a consequence of the fear of uncontrolled pain rather than the pursuit of euphoria or the avoidance of abstinence. This type of dependency occurs at variable rates dependent on the specific characteristics of the clinical situation and is a salient consideration in studying and managing patients who present on opioids.

The NCMB defines addiction as the compulsive use of a substance resulting in physical, psychological or social harm to the user and continued use despite that harm. The pharmaceutical literature argues that addiction is probably a rare phenomena in most chronic pain conditions, yet one can find numerous examples of social harm (imprisonment), and realize that the presence of psychiatric diagnoses, particularly personality disorders, as well as certain sociologic milieu can make abuse and addiction far more likely. The first scientific study to give us unbiased, hard data on prevalence of addiction, dependency and pseudo-addiction is underway (and NIH funded): http://www.fammed.wisc.edu/research/projects/opioid/html.

The development of tolerance with chronic opioid use is one of the most controversial issues, and again, there are no quality studies to lend credibility to anything we have been told. It is clear that tolerance develops to some degree in animal models, in treating cancer pain, in treating post surgical pain, and in street use. It is therefore reasonable to assume that tolerance will develop in all chronic dosing. In addition, in some clinical circumstances there may be a worsening of the disease with an accompanying change in nociceptive activity causing an increased requirement for opioids, mimicking tolerance and perhaps disguising the exacerbating illness. Any future study into tolerance must assess the potential of disease progression on results, although this may be extremely difficult to do in light of the many nebulous diagnoses encountered in chronic pain management.

It is clear that any patient presenting with a history of long term narcotics for the treatment of various alleged chronic pain states has increased disease conviction, a somatic preoccupation, and an externalized locus of control, all of which lead to increased opioid seeking behavior in the absence of increased nociceptive input. Indeed, some of the strongest arguments against chronic narcotic therapy comes from the neurobehavioral arena, and psychiatric diagnoses are important factors to consider before initiating opiates short-term. Narcotics can worsen depression, and psychological functioning has been shown to improve following opioid detoxification. The argument that effective analgesia improves depression has never been proven, and several studies have demonstrated that psychological functioning worsens with opiate therapy.

Part of the chronic benign pain controversy stems from divergent goals and philosophies of physicians. If the doctor's goal is to satisfy and palliate, chronic opioid therapy is an expedient way to achieve it. If the primary goal is to treat the underlying process and restore the patient to optimal functioning with integration into the family structure and community as well as a return to work, opioids may be contraindicated. The chronic use of opiates can place serious and perhaps insurmountable restrictions on vocational and psychological rehabilitation. Patients on opioids have a far higher rate of unemployment than chronic pain patients using non-opiate therapies. It is the opinion of this physician that maximal self-actualization and optimal functional recovery are far more valuable to a patient, concurring or otherwise, than simple long-term palliation.

The proper goal of pain management is not to completely rid the patient of pain. The goal is to reduce the intensity to the point that it does not inhibit function, and this is generally achieved with a 55-65% pain reduction. There are many non-opioid therapies available that have benefit (by randomized double blind studies and in my experience as
a clinician) in chronic benign pain. Neuropathic pain in particular is responsive in significant degree to the tricyclics and certain anticonvulsants. We are not without tools to work with.

Data driven prescribing favors the use of non-opioids to address chronic benign pain.
The science at this date is clear, and can be reviewed by the Board by going to:
http://www.oregon.gov/DAS/OHPPR/HRC/docs/OPIOID_EPC.pdf. As the studies are reviewed, please make note of their funding sources.

This is my third letter to the Board on the subject of opiates in treating chronic benign pain. I have called opioid zealotry a passing fad, and said that chronic opioid use robs patients of the ability to determine for themselves if pain is still real. I have voiced concerns that hundreds of thousands of North Carolinians are abusing prescription drugs, and how those drugs get on the street. I have asked the Board to place common sense restrictions on opiate prescribing. Today I reiterate the science.

Our profession is an honorable one, driven by ethics, empathy and good will. Our goal is to help, our creed to do no harm. We ensure that the things we do are helpful, not harmful, by studying them beforehand. We try to do that in as honest and forthcoming a manner possible by designing carefully controlled studies, independent of outside influences, and to do so repetitiously, because we find comfort in our treatment strategies when findings and results are reproducible.

But it is here, in treating chronic non-malignant pain with dangerous and powerful medication, that we have no valid science. Yet this course of care has been set in motion, has the very apparent approval of the Board, and unarguably has ramifications already far beyond the anticipation of its instigators. I have written to the Board concerning these ramifications, the role of physicians, and how that role allows the public to question the ethics of our profession. I respectfully request an evidence based reconsideration of your position. "



And then we find those researchers who question many facets of the chronic pain question. From a leading researcher in the field of neurosurgery in the American northwest:

"Patients with CPSMV (Ochoa, 1993) often receive a flawed diagnosis. The somatosensory, somatomotor, and vasomotor clinical manifestations usually associated with chronic pain in CPSMV patients are, by nature, neurologic, and therefore call for specialized history and physical evaluation of the nervous system. Moreover, the laboratory testing required to determine the actual source of those manifestations must address neurophysiologic parameters. These elementary requirements for proper identification of a pathophysiologic basis for CPSMV are too often not observed. Typically, CPSMV patients assessed by clinicians go without the benefit of formal neurologic evaluation. Some of the "gold standard" diagnostic tests used for differential diagnosis rely weakly on subjective reports from the patients. Many patients express substantial relief of the pain, muscle weakness, spasms, or sensory loss following medical interventions pursued with a diagnostic intent. These include somatic nerve blocks, selective sympathetic blocks, the application of skin patches or stimulators, or a simple inert ritual. It is clear that, to a major extent, the subjective and psychophysical effects of such interventions are due to the placebo phenomenon (Verdugo and Ochoa, 1994). Necessary placebo control for these interventions is usually not implemented because the clinician is either unaware of its high prevalence or mistakenly believes that it might be unethical (Ochoa, 1995).

The signs and symptoms collectively referred to as CPSMV are nonspecific and reflect a heterogeneous variety of medical entities. Chronic pains in CPSMV patients originate from any of several distinct primary health disorders that might be due to a variety of etiologies. Clear understanding of the diverse causes and types of CPSMV is essential for scientifically rational clinical and laboratory investigation of the whole spectrum of neurologic and psychiatric disorders that may underlie the condition (Ochoa, 1993, 1997; See also Mailis, 1995).

My strong contention is that many CPMSV patients experience pain emanating from a primary psychopathologic origin rather than a neuropathologic origin. The psychogenesis is usually through conversion-somatization, a phenomenon understood as unconscious attempts to relieve intolerable stress through the development of somatic symptoms (Cheyne, 1733; Hart, 1979; Lipowski, 1988; Ron, 1994; Ford, 1995). Characteristically, these symptoms are related to and under the potential influence of brain function: somatomotor, vasomotor, somatosensory, or the special senses. When these patients are not properly typified through rigorous differential neurologic diagnosis, they are harmed by omission of accurate diagnosis and treatment and by commission of unnecessary and sometimes harmful medical interventions (Ron, 1994; Ochoa, 1996). This group of psychopathologic ("neuropathic pain") patients also includes the illegitimate conscious malingerers and individuals with Münchausen's syndrome (Faust, 1995; Folks, 1995). A critique of dogmas promulgated through the book Reflex Sympathetic Dystrophy: a Reappraisal, edited by Jänig and Stanton Hicks, was recently reviewed for the journal Brain. The reviewer emphasized the misunderstanding of reflex sympathetic dystrophy (RSD) and pointed the finger at the subterfuge of its new taxonomic disguise: "complex regional painful syndrome" (CRPS), the inevitable iatrogenesis generated by such a diagnostic term, the placebo artifact incurred in diagnostic blocks, and the fallacy of automatically adjudicating to physical suffering the psychiatric dysfunction commonly associated with RSD."

 

2.

 

It is one thing to recommend marijuana, or a long acting opiate, on the basis of individual experience, which all then know must be taken with a grain of salt. But comments such as "the pure opiates like oxycontin are safe for long term use..." are not substantiated by the literature, except for that put out by Purdue Pharma, which has engaged in repeated corrupt misbehaviors with respect to marketing oxycontin to physicians. In addition, the amount of acetaminophen in the synthetic narcotics like Ultracet is not troubling at 1 po qid dosing. Tylenol is the most frequently taken medication on this planet... has been for years. The current rumblings about toxicity at 4 Gm per day are probably warranted, but few users of combination drugs reach that level of dosing. Besides, millions of people have taken 4 Gms per day OTC without medical follow-up and case reports of these folks turning yellow are few and far between ... and usually associated with dosing that exceeds the recommended norms.

The goal of pain management is not to alleviate pain... it is to reduce it to a level that is commensurate with function. Usually that is achieved with a 50-55% reduction in pain. If one takes oxycontin tid (which exceeds its dosing half-life) and requires additional oxy for "breakthrough" pain (which is inconsistent with neuropathic models), what happens, in just a short while, is that patient becomes an addict and unable to truely determine the level of discomfort. That patient also now has a powerful exogenous reason not to get well, or to pursue other treatment modalities.

The proper approach to neuropathic pain is a stepped program that is guided (by an interdisciplinary team approach) towards (1) identifying the etiology (2) continuing to rule out a malignant or life threatening pathology that may hide in the maze of neuropathic pain (3) lifestyle modifications (4) physical and occupational therapies (5) psychological assessment and reassessment (6) an evidence based approach to medications for neuropathic pain.

If one cares to examine the evidence with respect to opiates for chronic non-malignant pain, they may do so at:

http://www.oregon.gov/DAS/OHPPR/HRC/docs/OPIOID_EPC.pdf.

 

 

 

            D. Neurontin

 

Neurontin is not addictive, at least no more than aspirin. Like Greg wrote, many patients are taking a lot more than you. When compared against other AEDs in non-biased studies, except for those neuropathies due to herper zoster, diabetes, and trigeminal neuralgia, the drug did not pass muster. There has been a lot of bad-information put out by the folks that make and profit from Neurontin. Many in the medical community are not sure what to believe about this drug.

http://www.kglg.com/case/case.asp?lngCaseId=2457

and

http://www.kaisernetwork.org/daily_reports/rep_index.cfm?hint=3&DR_ID=18008


are links to information regarding allegations of improper marketing, false indications for use, etc.

The manufacturer recommends that when discontinuing Neurontin it be done so over a period of not less than one week. This has nothing to do with withdrawal in the normal sense. Abrupt discontinuation in a person chronically taking a large dose could precipitate seizures, even in those patients who have never had one. You may review this at:

www.pfizer.com/pfizer/download/uspi_neurontin.pdf

 

            E. Cymbalta

 

Rick argues that Cymbalta takes weeks before it provides maximum analgesia, while D.G. argues the reverse... about a day. In truth there are but two studies out there to guide us, and these were funded by the manufacturer. Such a pharmaceutically funded study has a 5 times greater chance of being favorable to a drug than a well-controlled unbiased study. But lets give EI Lilly the benefit of the doubt. Lets suppose that the billions to be made in addressing neuropathic pain and depression had no effect on study design, data development, or reporting of results. Let's assume that, at least for once, truth and altruism were the dual goals of this research. What can that science (the only science we have) tell us about Cymbalta.

First we must also assume that the mechanism of nerve injury in DPN (diabetic peripheral neuropathy) is similar to the nerve injury that occurs in PNE, because both of these studies looked at the management of DPN alone. The total number of patients involved in both studies was 791, which in my opinion is sufficient for statistical analysis. To be included in the study the patient had to have painful neuropathy for at least 6 months, and be either a Type I or Type 2 diabetic. In addition to receiving Cymbalta, patients in both studies were allowed up to 4 Gm. of Tylenol per day for pain. The amount that the different patients took did not figure into the statistical analysis, so right up front one can see that the patient who took two 500 mg. tylenol 4 times a day would probably have a better pain score than the one who took cymbalta alone. So again, we must assume this did not affect the data. Both studies compared Cymbalta 60 mg q day, Cymbalta 60 mg. bid, and placebo.

These were the results:

(1) Some patients experienced a decrease in pain as early as week 1.

(2) 68% of patients had a 10% reduction in pain from baseline with Cymbalta 60 mg. q day, and 66% with Cymbalta 60 mg. bid., while 60 % of patients given placebo had a 10 % reduction in pain from baseline.

(3) 48 % of patients on Cymbalta 60 mg. q day, and 47 % on Cymbalta 60 mg. bid had a 50 % reduction in pain from baseline, while 27% of patients given placebo had a 50% reduction in pain from baseline.

(4) 18% of patients on Cymbalta 60 mg. q day, and 17 % on Cymbalta 60 mg. bid had a 90 % reduction in pain from baseline, while 6 % of patients on placebo had a 90 % reduction in pain from baseline.

Therefore, for the benefit of the forum, it is reasonable to conclude that: (a) analgesia can be expected (68%) in the first two weeks following initiation of Cymbalta, but it is uncommon indeed for analgesia to arrive in the first few days;
(b) there appears to be no difference in analgesic efficacy with 60 mg. once a day or 60 mg. twice a day.
(c) there is a significant placebo effect to pain relief with almost any modality.

 

            F. Avigen AV411

 

Avigen has some explaining to do to the medical community and to the FDA if it is hoping to address neuropathic pain by suppressing certain inflammatory cytokines. Neuropathic pain is not inflammatory. Nociceptive pain is partially generated as an inflammatory response to injury. Nerve pain can be both nociceptive and neuropathic if the process of injury is on-going, but generally the balance tends towards a neuropathic generator. This glial attenuator, AV411, could be beneficial in rheumatoid states and even in sarcoidosis. It might reduce or alleviate pain from an acute insult to the body by stalling the inflammatory cascade. But it will not address nerve pain if the generator is entirely neuropathic. One cannot suppress what is not happening in the first place. Just like immunosuppression with steroids when there is no immune system activation. I admit the company is banking on glial cell activity in the CNS, but this is not proven science.

Don't trust any of these pharmaceuticals, especially one that says it wants to join the big boys.

While AV411 has been used in Japan for over a decade to treat asthma, and has been recently approved for such use in Korea, there have been no reports in the medical literature from those nations where neuropathic pain has improved in patients taking this drug.

For a vigorous but biased opinion of the drug, go to:

http://www.jmdutton.com/research/avgn/reports/avgn_report_061206.pdf

 

 

            G. PARP-1

 

Yes, we certainly would like to consider any neurotrophic med as a possible combination. I think the PARP-1 inhibition may result in lower rates of inflammation in certain areas of the brain, and therefore have the possibility of affecting those diseases in which inflammation is the initiating step or propagating component, like the neurodegenerative diseases mentioned. The modulation of neuropathic pain does not involve inflammatory events. It is a complex yet straightforward arrangement of circuits, intended to mollify pain impulses after they arrive at the cord but before they reach the cognitive areas where these impulses can be perceived as pain. It is as though God felt we could not handle pain impulses in their raw state, but rather man needed an inherent system of filters through which pain must pass before becoming recognized as pain. This would alter the intensity, and in some cases where pain impulses were minimal, these impulses would be dismissed by filters before reaching the cortex. With the neuropathic pain of PNE, these filters get overwhelmed, but unfortunately not clogged.

At each end of the filter system are relay stations. At each relay station are certain designated messengers whose duty is to take the impulse arriving, cross the track, and pass that information on to the axon which will be traveling through these filters to the subcortical level (in the midbrain). The thing about these messengers is that they sometimes are given messages that have been altered, they sometimes have to approach more than one axon, they often have to compete with other messengers for the axon's attention. Each and every pain impulse delivers this confusion to the cord, which it attempts to sort out with the use of interneurons. But in neuropathic pain many of these interneurons are so worn out in the struggle that they actually die. Still, this entire process of filter and relay has no inflammatory component within the central nervous system (although acute pain in the peripheral body is mediated by inflammation). It is more a matter of overload and disrupted pathways, pathways attempting to modulate a stimulus far too intense or too durable for their capabilities, pathways attempting to include more interneurons by expanding their receptive fields but still losing to the on-going neuropathic input. We need meds that affect these filters, that give encouragement to the appropriate messengers and slay those messengers which are mediating the upward pain signal. We need electricians, not fire fighters.

 

          H. Minocin

 

Minocycline is currently marketed as Minocin, and is useful in the treatment of acne vulgaris. Teenagers with acne are usually given Minocin 50 mg. bid times 30 days, and it is effective (temporarily) except in recalcitrant cases. Fairly safe at that dose, and recently prescribed quite often, since it doesn't stain the teeth in teenagers like the tetracyclines.

The stated supposed mechanism of action with respect to neurodegenerative disorders means that while the drug may turn out to be (we'll see) effective in PD and AD, even Huntington's, it's not going to be of use in modifying central pain mechanisms nor in remedying neurapraxis in Alcock's from true pudendal entrapment. If it does prove useful, it will do so as a centrally acting adjunct (to other medication) rather than a drug that alone cures.

 

            I. Quinamm

 

Yes, Quinamm is effective in leg cramps, probably even better than the reported 50%. Frankly, I don't know of a single patient in whom it doesn't work. But the mechanism of painful nocturnal calf cramping and subsequent pain is quite different from the pain generators in PNE. Or in any muscle activity that could be responsible for pressure on a pudendal nerve branch. Calf pain during intense muscle contraction or tetany is mostly due to the inability of the circulatory system in that part of the extremity to meet the oxygen requirements of the overactive muscle. The muscles in the area are large and thick, and the vascular supply probably the least of any part of the body, especially when recumbent. A tissue, like muscle, that is working hard but poorly fed (anaerobic metabolism) begins to generate the ATP (the cellular gasoline I talked about in a post yesterday) via gluconeogenesis alone, resulting in the production of large amounts of lactic acid, the presence of which is extremely painful. Lactic acid is the generator of pain in states like angina where oxygen requirements are not met by oxygen supply (to the myocardium). By increasing the refractory period for muscle contraction, as Casparios has written, Quinamm also reduces muscle work, thus muscle oxygen requirements, and thus the available oxygen is sufficient to allow the Kreb's cycle to work. And no lactic acid is produced.

The pelvic floor muscles are generally broad and thin, and the vascular supply more than ample, regardless of body position. Ball your hand into a fist, squeeze tightly without letting up. Unless you have diffuse atherosclerotic disease, or subclavian steal syndrome, despite the self-induced tetany, you will have no pain. Interestingly, Quinamm does work peripherally on muscle itself whereas most "muscle relaxants", ie Baclofen, work centrally (most are thought to work in the thalamus). So the idea is good, but in practice it won't work. Then again, almost anything has a placebo effect.

 

                 J. Tylenol

 

As you are aware, Tylenol arthritis has 650 mg. of acetaminophen per dose, so the four you take would total less than 3 Gm per day. The study Karen has posted looked at liver numbers in patients on 4 Gms per day.

Tylenol has always been a classic example of a predictable hepatotoxin when taken at super-therapeutic doses. The high limit of therapeutic dosing, until now, has been 4 Gm. The above study calls into question lots of prior work on dose-effect of Tylenol and what is a safe dose under most circumstances. Most likely this work will be questioned until other randomized studies give the same results. Still, one must view 4 Gm of Tylenol with caution. It has always seemed too much to me.

As with many areas of pharmacology, toxicity is not a straight line, but rather a sigmoidal one. Therefore, I feel the 2.6 G. you take in the 4 Tylenol arthritis caps are safe for you, unless you are taking other medications that may also be potentially hepatotoxic, or use alcohol frequently. It would be a good idea to have periodic liver function testing done, maybe twice yearly if your numbers remain normal. Here is a link to Tylenol toxicity, which may have to be revised somewhat in light of the information Karen has shared.

http://www.emedicine.com/emerg/topic819.htm

 

            K.  Effectiveness of current medications for neuropathic pain

 

DRUGS FOR PAIN IN POLYNEUROPATHY. HOW EFFECTIVE ARE THEY?

Sindrup S.H., Jensen T.S. Depts. of Neurology, Odense and Aarhus University Hospitals, Denmark.

Drugs from several different classes have been shown to relieve pain in polyneuropathy. We performed a systematic review to identify placebo-controlled clinical trials on oral drugs in painful polyneuropathy and calculated for each drug class the numbers needed to treat (NNT) to obtain one patient with >/=50% pain relief (1/[>/=50% reliefactive/totalactive - >/=50% reliefactive/ totalplacebo]).

Drug NNT(95 % CI)

Antidepressants
Tricyclic 3(2.4-4.0)
Tricyclic, optimal dose 1.4(1.1-1.9)
Sel. serotonin reuptake inhibit. 6.7 (3.4-435)



NMDA-antagonist
Dextromethorphan 1.9 (1.1-3.7)

Sodium channel blockers
Phenytoin 2.1(1.5-3.6)
Carbamazepine 3.3(2-9.4)
Mexiletine 10 (3-infinity)

Calcium channel blocker
Gabapentin 3.7 (2.4-8.3)

Tramadol (atypical opioid) 3.4 (2.3-6.4)
L-dopa 3.4 (1.5-infiniti)

Tricyclic antidepressants appear to be the most effective drugs. Selective serotonin reuptake inhibitors and mexiletine are clearly less efficacious, whereas the response on dextromethorphan, gabapentin, and tramadol is in the same range as the tricyclics.

 

            L. On the pharmaceutical industry

 

Perhaps even more disconcerting is the relationship of pharmaucetical industry sponsorship and results found in supposedly controlled clinical trials. The American Journal of Psychiatry (October 2005) examined funding source and author financial conflict of interest in all clinical trials published in the four leading psychiatric journals (Am J of Psych, Archives of Gen Psy, Jour of Clin Psychopharmacology, J of Clin Psy) between 2001 and 2003. 397 trials were identified. 239 received funding from a pharmaceutical company. 162 of these trials were supposedly randomized, double blind, placebo-controlled (the best biased free studies we can devise). In these 162 trials it was discovered that those studies which were funded by the pharmaceutical industry were 500% more likely to report a drug to be superior to placebo than a study not industry funded.

 

IX. On the use of medications in combination to address neuropathic    pain

 

1.

I like transdermal delivery systems. Avoids many side effects, especially gastrointestinal. Also, it avoids the first pass through the liver, which in many instances, tries to modify the drug (or metabolize it). Every medication taken per orum get absorbed into the blood stream in the small intestine, and all that blood must first pass through the liver before reaching the tissue to which it is targeted. A transdermal delivered medication goes first through the heart and then to the tissue to which it is targeted.

An NMDA receptor antagonist that does so by ion channel blockade is a novel approach, and in theory might work. Apparently early trials are promising. If it works in vitro, then clinical efficacy will depend on concentration required to achieve this blockade, the bioavailablity of the drug at the level delivered by the transderm system, and whether or not nociceptive impulses find a way to override NMDA antagonism.

Which brings up an interesting thought. We suppose our damaged pudendal nerve is generating pain impulses (transduction) that travel along sensory afferents in the pudendal (transmission) to reach the cord. Here these impulses are subjected to the defensive interplay of a part of the spinothallamic tract, which attempts to modulate pain so that the impulses traveling to the brain (and telling it of pain) are weakened (lessened, modulated). A lot of medications that members take ... most, in fact... Lyrica, Cymbalta, narcotics, synthetic narcotics like tramadol, the benzodiazeams, neurontin, the tricyclics, and on and on ... all of these medications act at either the cord level or the cortex level to increase modulation of pain impulses or to diminish the perception of these impulses
once they reach the cortex.

What I wonder is this: all of us have taken a medication that gave us some degree of relief from pain, only to become less effective with time. In such case we often conclude that either our disease is worsening, or the medication has lost its efficacy. What if what is really happening is that the body, having set a certain level of nociceptive stimuli as normal (this is a bit different than the concept of central sensitization), begins to channel these nociceptive impulses through receptors that are unaffected by the medication, that is, receptors that use an alternate neurotransmitter. The switching equipment simply re-routs the signal so that it can be maintained.

The body is constantly doing such with respect to other disease processes. Inside the carotid artery in your neck are tiny baroreceptors that are essentially responsible for maintaining the body's blood pressure. When you develop hypertension, over time, these baroreceptors re-set, and work to counter the effects of anti-hypertensive medications. If one takes a single blood pressure lowering agent, say a beta blocker, this drug works by reducing cardiac output (lowers the stroke volume of the heart as well as the heart rate). If the trottle on a pump is pulled to slow, and the pump then pumps less water into a pipe, the pressure in the pipe will fall. The baroreceptors then attempt to compensate and pull the blood pressure back to higher number by increasing peripheral arterial resistance. In this counter-move, by reducing the diameter of the pipe, the pressure will rise. Endocrinologists and family docs have learned that the best way to manage blood pressure is to use smaller amounts of more medications, each targeted to address a specific item in control, some reduce the volume in the pipe, some slow the pump, some dilate the pipe.

So what if no single medication will work well, for long, with central pain, regardless of medication, and no matter what new drugs researchers come up with. Since pain pathways are far more complicated than baroreceptors in the neck, the body may have multiple ways to defeat any neuropathic analgesic. It may not be a matter of finding a drug that will close a single receptor, and thus a single pain pathway. We are eventually going to have to deal with all receptors, and all their combined neurotransmitters.

 

2.

 

The NEJM is one of the world's leading medical publications, each entry carefully peer-reviewed. In the Netherlands neuropathy was addressed by comparing combinations with a single agent and placebo. Combinations won out. While the number of patients in the study was statistically significant, as well as the differences in scores, in my opinion this is far too small a model. Moreover, measurement of effectiveness was short term. Those of us with entrapment neuropathies have pain for longer than 5 weeks, and these types of studies need to also tell us what happens in terms of effectiveness down the road.

We will find answers in combination therapy, but we will not find the answer we need in two drugs. I suppose one could take morphine at such a dose that almost all senses are extinguished, but that is not what we need, nor what shall be proposed. We need a strategy based on carefully researched neuropharmacology at the cellular and synaptic level.

While this study does prove a point, I wonder how many of the patients enlisted in the study had prior experience with opiates, how many had needle tracts, and how did they arrive at pain scores of 5.72. I know what a 10 is, and a 2, but I have trouble telling between a 5 and a 6 and a 7. I know this is an international forum, and that others deserve due respect. But this article comes from the Netherlands of all places. The NEJM must have been under some political pressure from the Bush administration (maybe in exchange for some troops to Iraq) to publish it.

 

3.

 

Yes, Karen, I think it is relevant. The effect was central, not peripheral. Remember transduction, the first phase of the pain process. Here the injury, especially if acute, is translated by receptors on the nerve ending into an electrical discharge that moves along the sensory axon (transmission) to the cord. Versed and Demerol do not affect transduction in neuropathic pain, nor do they affect peripheral transmission. Once the impulse arrives at the cord, many games are played with it before it is further transmitted upward along the spinothallamic tract. In neuropathic conditions the defending team is weakened, the offense team strengthened, and the signal reaching upwards is thus magnified versus a normal pain impulse traveling north.

Versed, like the other benzos, attaches to the alpha subunit of the GABA receptor, reducing excitation. This weakens the pain signal that has been ineffectively modulated. Demerol works on all the central opiate receptors throughout the cord and cortex. Both drugs have a rapid onset of action, and both are rapidly metabolized. Yes, you received fairly immediate relief, but you were also playing with reward pathways, which are dangerous. The best benzo, and I believe one needs to be incorporated into any management strategy for neuropathic pain, would be one with a constant blood level, no cocktail effect, and slowly metabolized.

How many of you would be willing to accept a 75% reduction in pain, and live with the remaining 25%? What I'm afraid is going on centrally in terms of achieving total analgesia is that the line between dosing and clinical response is not a straight one, but rather sigmoidal. What this means is that in proposing a medication strategy, I believe I can get us to the point of reducing pain by 75% with a minimum of side effects. But further analgesia would require dosing far out of proportion to what is necessary to get us to 75%. I have been looking at all inhibitory and excitatory neurotransmitters, especially glutamate and g-aminobutyric acid (GABA). GABA is our friend, by far the most important inhibitory neurotransmitter. The difficulties in devising strategy are compounded by the multiplicity of variations in sites GABA will affect. And by the confusing role of some neurtransmitters. Norepinephrine, for example, is an excitatory transmitter in some clinical states, but in pain states it becomes inhibitory. So the very same chemical used to confer information from nerve cell to nerve cell changes its color depending on the information it wishes to convey.

Our optimum strategy, the one that will give us relief from most of our pain, and do so across the board, and in Ireland as well as Columbus, Ohio, is a mix that does the following (1) inhibits serotonin and norepinephine re-uptake at the synapse, thus making more available for transmission (2) increase the effectiveness of GABA receptors, where the combined effect of these meds is much stronger than the sum of their combined effects (3) maximize opiate receptor function with a bare minimum of medication. To do will require 4 drugs, all universally available to my knowledge, in low doses, on a careful schedule. Think of how blood pressure control is achieved, by using lower doses of multiple meds to both avoid side effects and fool the body's compensatory mechanisms. In neuropathic pain, we can be successful if we do the same, and are willing to accept a significant reduction in pain as the goal rather than the elimination of pain.

 

X. On acupuncture

Like you, I am not sold on acupuncture. But our knowledge of how this modality works has increased a good bit in the last 20 years. I wanted to give you a view of the current science on acupuncture versus what one might read on various forums.

Early on the placebo effect was dismissed as the main mechanism of action. Animals are not capable of demonstrating the placebo effect, yet, veterinary medicine uses acupuncture as an effective means of pain relief in treatment. Also, the analgesia from acupuncture can be blocked by certain drugs and reversed by administering the opiate-receptor antagonist naloxone. This indicates that a physiologic mechanism is involved in producing acupuncture analgesia rather than a placebo one.

When an acupuncture needle is inserted into a traditional acupuncture point, afferent sensory axons are stimulated (transduction), which results in a nerve impulse being sent to the spinal cord. Here, endorphogenic cells are stimulated to release endorphins (brain chemicals) such as enkephalin and dynorphin. These substances provide local inhibition (blocking) of the incoming pain signal.

In addition to causing effects in the spinal cord, the nerve impulse produced by the acupuncture needle is also transmitted to the periaqueductal gray area of the mid-brain, where enkephalin is released. Enkephalin, in turn, brings about the release of the monoamine neurotransmitters serotonin and norepinephrine in the spinal cord. These monoamines play a role in suppressing the transmission of the pain impulse. In addition to its role in reducing pain, serotonin is involved in producing an antidepressant effect in the brain. In fact, many of the newest antidepressant drugs work by prolonging the effect of serotonin in the brain.

A third effect brought about by acupuncture is the release of beta-endorphin and Adreno-Cortico-Tropic Hormone (ACTH) from the pituitary gland into the bloodstream and cerebrospinal fluid. These endorphins produce system-wide pain relief, remote from the area where the acupuncture needle was inserted. ACTH, in turn, activates the adrenal gland to release cortisol into the bloodstream. Cortisol is a naturally occurring steroid substance that has anti-inflammatory properties. The net result of these 3 areas being stimulated is an inhibition of the incoming pain sensation locally, a general, morphine-like, pain-relieving effect throughout the body, an anti-inflammatory effect, and a general sense of improved well-being.

Depending on which acupuncture points are chosen, whether they are near the painful site or farther away, determines which of the 3 pathways mentioned are primarily activated. Placing needles near the painful site brings about a more intense pain relief, because it activates all 3 centers (spinal cord, midbrain, and pituitary gland). Local needling also maximizes inhibition of the incoming pain signal at the segmental region of the spinal cord. Needling acupuncture points distant to the painful area predominantly affects the mid-brain and pituitary gland. In general, a combination of local and distant acupuncture points are used together during a treatment, in order to maximize the effects at all 3 centers.

Like all treatment modalities, acupuncture does not work some of the time. Skill of the acupuncturist, the gate theory of pain, and many other factors are going to determine whether or not there is benefit. It is certainly a low risk procedure, and for someone from Hong Kong, like fabexpress, information on acupuncture should abound.

 

X. On spinal cord stimulators

Your second question relates to spinal cord stimulators and the likelihood of additional interventional modalities to treat neuropathic pain in the future. Below I present three articles, and at the end of these I will summarize.

The Cochrane database is the Consumer Reports of medicine. Cochrane looks at all the evidence that is out there, grades and rates the quality of that data, and performs peer reviewed statistical analysis that can be trusted, for these people are as unbiased as any in science.

Article 1:
The Cochrane Database of Systematic Reviews 2006 Issue 2
Copyright © 2006 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

There is insufficient evidence to assess the benefits and harms of spinal cord stimulation for the relief of chronic pain.

Spinal cord stimulation (SCS) is a form of therapy used to treat certain types of chronic pain. It involves an electrical generator that delivers pulses to a targeted spinal cord area. The exact mechanism of action of SCS is poorly understood. We undertook a review of the available evidence and found two randomized controlled trials of this intervention. One trial studied the effects of SCS for Failed Back Surgery Syndrome and the other was a trial of patients with Complex Regional Pain Syndrome Type 1 (reflex sympathetic dystrophy). We concluded that SCS might be effective for certain patients but there is little evidence available to assess the benefits and harms of this treatment.

Background
Spinal cord stimulation (SCS) is a form of therapy used to treat certain types of chronic pain. It involves an electrical generator that delivers pulses to a targeted spinal cord area. The leads can be implanted by laminectomy or percutaneously and the source of power is supplied by an implanted battery or by an external radio-frequency transmitter. The exact mechanism of action of SCS is poorly understood.

Objectives
To assess the efficacy and effectiveness of spinal cord stimulation in relieving certain kinds of pain, as well as the complications and adverse effects of this procedure.

Search strategy
We searched MEDLINE and EMBASE to September 2003; the Cochrane Central Register of Controlled Trials (CENTRAL) (Issue 3, 2003); textbooks and reference lists in retrieved articles. We also contacted experts in the field of pain and the main manufacturer of the stimulators.

Selection criteria
We included trials with a control group, either randomized controlled trials (RCTs) or non-randomized controlled clinical trials (CCTs), that assessed spinal cord stimulation for chronic pain.

Data collection and analysis
Two independent reviewers selected the studies, assessed study quality and extracted the data. One of the assessors of methodological quality was blinded to authors, dates and journals. The data were analyzed using qualitative methods (best evidence synthesis).

Main results
Two RCTs (81 patients in total) met our inclusion criteria. One was judged as being of high quality (score of 3 on Jadad scale) and the other of low quality (score of 1 on Jadad scale). One trial included patients with Complex Regional Pain Syndrome Type I (reflex sympathetic dystrophy) and the other patients with Failed Back Surgery Syndrome. The follow-up periods varied from 6 to 12 months. Both studies reported that SCS was effective, however, meta-analysis was not undertaken because of the small number of patients and the heterogeneity of the study population.

Authors' conclusions
Although there is limited evidence in favor of SCS for Failed Back Surgery Syndrome and Complex Regional Pain Syndrome Type I, more trials are needed to confirm whether SCS is an effective treatment for certain types of chronic pain. In addition, there needs to be a debate about trial designs that will provide the best evidence for assessing this type of intervention.

Article 2
Presented as an advertisement by the Interventional Pain Center at MGH, certainly a world-class hospital. Note the sentence “there is substantial scientific evidence on the efficacy of spinal cord stimulation”, and compare this to the unbiased Cochrane review.

Spinal cord stimulation is the most common mode of neuromodulation used in managing chronic low back pain. It is minimally invasive and reversible as opposed to nerve ablation.

The basic scientific background of the initial spinal cord stimulation trials was based on the gate control theory of Melzack and Wall. It has been demonstrated in multiple studies that dorsal horn neuronal activity caused by peripheral noxious stimuli could be inhibited by concomitant stimulation of the dorsal columns. Various other mechanisms, which may play a significant role in the mechanism of action of spinal cord stimulation, include the suppressive effect of spinal cord stimulation on tactile allodynia, increased dorsal horn inhibitory action of gamma-aminobutyric acid (GABA), prevention or abolition of peripheral ischemia, and effects on human brain activity.

Spinal cord stimulation is indicated in low back pain with radiculopathy, failed back surgery syndrome, complex regional pain syndrome, peripheral vascular disease, and ischemic heart disease. There is substantial scientific evidence on the efficacy of spinal cord stimulation for treatment of low back and lower extremity pain of neuropathic nature. Clinical studies revealed a success rate of from 50% to 70% with spinal cord stimulation, with decreased pain intensity scores, functional improvement and decreased medication usage.


This review discusses multiple aspects of spinal cord stimulation, including pathophysiology and mechanism of action, rationale, indications, technique, clinical effectiveness, and controversial aspects.


Article 3: Dr. Saff gives a balanced approach, explains the pros and cons, and presents a reasonable approach to interventional technology applications.

INTERVENTIONAL THERAPY FOR NEUROPATHIC PAIN
Gary N. Saff, MD
Assistant Clinical Professor of Anesthesiology
St. Luke’s Roosevelt Hospital

There exists a vast array of interventional therapies for the treatment of painful
peripheral neuropathies; however, the majority of these pain syndromes can be
successfully managed with the more conservative oral analgesics and adjuvants. Even in my practice at a tertiary interventional pain management center, I usually have success with an aggressive trial of various oral medications. For patients that fail the oral medication trials, either due to inefficacy or intolerable side effects, we proceed with interventions that should be familiar to most anesthesiologists specializing in pain management. These techniques include local anesthetic blocks, implanted spinal cord stimulators, and implanted intrathecal catheters. These interventional therapies are ideally performed by an anesthesiologist because the skills required for nerve blocks, spinal, and epidural injections are performed routinely in the operating room. More importantly, the treatments of complications from these procedures (apnea, seizures, and hemodynamic instability) should be well within the anesthesiologist’s skill and
comfort level.

Somatic blocks may be performed peripherally (interscalene, axillary, popliteal, femoral) or neuraxially (spinal, epidural). In addition, sympathetic blocks (stellate ganglion, lumbar sympathetic) can be used to treat small fiber pain syndromes that may be associated with an autonomic component. Narcotics, local anesthetics, and various analgesic adjuvants may be part of the injection. The toxicity of these medications is minimal when properly placed. However, if the needle is accidentally placed in a vessel during a procedure such as an interscalene block, then even ¼ cc of local anesthetic would cause a seizure requiring the physician to perform airway management techniques. Due to metabolism and redistribution of the injected medication, these nerve blocks will have a finite life span, however may help break a "pain flare" and spinal cord "wind-up" process in someone whose pain is otherwise well controlled.

Spinal cord stimulation is based on the Gate Control Theory whereby the stimulation of large myelinated fibers receives preferential processing in the CNS (central nervous system) over afferent input from the smaller A-delta and C fibers. This procedure is best reserved for patients with distal limb pain syndromes, unilateral over bilateral. The procedure is similar to the placement of an epidural catheter; however, this device delivers an electric current, which the patient often perceives as a "tingling" and more pleasant sensation than the previous pain. The specific lead conformation, rate, amps, and bandwidth can be altered to obtain maximal pain control. A percutaneous trial should be performed in the sterile atmosphere of an operating room. One hour or less is all the time that is required unless the area of pain is difficult to "capture". It is not a
painful procedure and the patient is only lightly sedated so as to maintain a dialogue with the physician as to where the stimulation is perceived. For lower extremity pain, the epidural needle (15 gauge) is placed at a gradual angle of less than 30 degrees at the T12-L2 area with the stimulator lead threaded to the T6-T10 area to obtain simulation in the relevant part of the lower extremity. Upper extremity pain involves epidural needle placement at C7-T3 and stimulator lead threaded to the C3-C6 levels. Sometimes dual bilateral leads are required to obtain bilateral or proximal extremity and back stimulation. This procedure is performed on a trial basis lasting several days as an inpatient or outpatient. The trial electrical generator box, the size of a deck of cards, is
kept externally and can be worn on the belt. If successful, the leads are internalized and connected to an internal battery device the size of a pacemaker or to an external battery device which sends transcutaneous current to an antennae and stimulator system. Percutaneous leads are not much larger than the diameter of a paperclip. For more difficult or broader coverage, a neurosurgeon is required to make a small laminotomy for placement of a "paddle" shaped lead. The system can bereprogrammed through a control device transcutaneously. The patient also has some limited control over the stimulation with a less complex control device for home use. Spinal cord simulator long-term studies reveal 50% persistent satisfactory pain relief at 2 years. I have found that choosing an ideal candidate takes clinical experience and seasoning on behalf of the physician. Complications include infection, lead migration or failure, pulse generator/receiver failure, loss of pain relief, uncomfortable stimulation, allergic response, nerve injury, and paralysis.

To summarize, interventional techniques mainly consist of nerve blocks, spinal cord stimulation, and intrathecal pump placement only after aggressive trials of oral medications have failed. The most benign of these procedures is nerve blocks, which have a finite duration, though are helpful in pain flares in which case we see prolonged analgesia in excess of the duration of the block. Spinal cord stimulators and intrathecal pumps can also give excellent results and are indicated in the treatment of painful peripheral neuropathies. Of utmost importance in these technologies is a thorough trial of the temporary percutaneous stimulator lead or neuraxial medication infusion before
the decision to implant hardware can be justified. Psychiatric clearance should be performed routinely in anyone suffering with chronic pain. The patient population’s response to painful peripheral neuropathy is so vast and complex that making strict protocols and performing well-controlled scientific studies almost becomes an impossibility. Hence, there is wide variation in the practice of this type of pain management as well as there being plenty of exciting opportunities for new studies in the future.

As existing interventional technologies improve and new ones come on line, I suspect the prudent physician will use these to augment and compliment medication regimes, rather than rely on a modality such as the cord stimulator alone to hold the line against pain. If, for example, a certain generated pulse arriving by artificial means to the cord would activate opiate receptors and cause the release of endogenous endorphins, and a second generated pulse of differing frequency, wavelength, signal strength etc would synergistically affect modulation pathways, then the chances would be very good that a low dose benzodiazepine alone but in concert with these given pulses would provide the severely compromised neuropathic pain patient with complete analgesia as well as full functional recovery.

 

XII. On lumbar disc herniation

 

It appears that what you are saying, Katy, is that you have symptoms suggestive of an L5/S1 disc herniation, but no clear compression, entrapment, or other neural compromise on MRI. Then your symptoms progressed to include the perineum, and the sacral roots were then diagnosed as responsible. It also appears you are saying that you have been told that the symptoms from the L5/S1 dermatone, even with a negative MRI, are the result of inflammatory cytokines, and that you have also been told that these inflammatory components then made their way inferiorly to affect S2-S4. So that now you have symptoms relating to L5-S1 and perineal pain attributed to pudendal neuropathy arising at S2-4. Is that correct?

If so, you have received good advice from the members of the forum, and your questions have given rise to those from others who suffer similarly. Karen has suggested a diskogram, and indeed, it the modality of choice in a patient with a normal MRI but continuing radicular symptoms. You meet both criteria for such a study: duration of pain and failure of multiple modalities to address that pain.

Even with a negative MRI and negative diskogram, you can still hurt from nociceptors located in the annulus fibrosis at L5/S1. You do not need nerve compression to elicit either an inflammatory event (with inflammatory cytokines) at that level nor a neuropathic response. Neuropathic pain can set up from any on-going pain generator if the cord is exposed to sufficient nociceptive signals over a sufficient period of time. So because you might have a normal MRI, and indeed, the diskogram recommmended by Karen may also be negative, but you still could have a pathological reason for pain. Only this reason is not amenable to surgery, so do not go under the knife in an attempt to rid yourself of pain.

With respect to the movement of cytokines from L5/S1 to involve the sacral plexus and origins of the pudendal, this is most unlikely. In fact, because of the arrangement of fascial planes, meninges, and other connective tissue placement, this sort of shared involvement from a single process, especially over time, would be nearly impossible. You may have a disease process that is involving multiple levels, or you may have both a neuropathic process at L5/S1 and another process involving the pudendal. A CT guided block of the pudendal would tell you whether the nerve itself was involved or whether the process was originating at the cord or sacral level. Although the sacrum is indeed fused, it is also possible for tumors, bone cysts, and some degenerative states to affect the nerve exits in much the same way as a ruptured disc might affect the lumbar spine.

 

XIII. MRI, CT and discography for lumbar disc diagnosis

Computerized tomography (CT scan) can be used to identify symmetric uniform degenerative changes of the disk that result in a diffuse annular disk bulge, seen as diffuse peripheral extension of disk material. The margin of the annular bulge is usually smooth in contour but may be asymmetric. Overlapping 3- to 5-mm axial sections in 3-mm increments with multiplanar reformations is the optimal protocol. Sagittal reformations or CT scans may demonstrate loss of disk height. An intradisk vacuum phenomenon is seen commonly as focal or linear areas of markedly diminished density within the intervertebral disk.

CT also may demonstrate endplate degenerative changes, including sclerosis and cortical irregularity with erosions. CT allows for visualization of disk degeneration, bulging, and herniations but not with the detail of MRI. Degeneration of the intervertebral disk and endplate commonly is observed at autopsy and in imaging studies in asymptomatic patients. In the lumbar spine, CT scans are abnormal in 35% of asymptomatic volunteers of all ages and in 50% of persons aged 40 years or older.

MRI is currently the criterion standard imaging modality for detecting disk pathology. MRI has demonstrated degenerative changes in 3 times as many motion segments as contrast-enhanced CT scan. MRI uses a magnetic field to obtain direct multiplanar images with excellent soft-tissue contrast, and MRI provides superb resolution and precise localization of intervertebral disks.

On MRI, degeneration of the intervertebral disk results in diminished signal intensity on T1- and T2-weighted images. These signal intensity changes are due to diminished water and glycosaminoglycan content and increased collagen content of the intervertebral disk. Sagittal images provide the best depiction of the loss of intervertebral disk height. Bulging of the disk annulus can be demonstrated on axial and sagittal images. Posterior extension of the disk annulus by >1.5 mm is invariably correlated with radial tears of the disk annulus. Furthermore, tears of the annulus fibrosus can be visualized as HIZ lesions (HIZL).

In vitro, MRI can demonstrate radial tears of the disk annulus. The sensitivity of MRI is 67% compared with diskography in detecting radial annular tears. Focal enhancement of radial tears may be seen on gadolinium-enhanced T1-weighted MRIs. This enhancement has been attributed to granulation tissue in the tear. A vacuum phenomenon is demonstrated as an area without signal intensity in the intervertebral disk; this is best appreciated on sagittal T1-weighted images. MRI shows notable abnormalities in approximately 30% of asymptomatic people of all ages, and in 57% of those aged 60 years or older. Disk degeneration or a bulging intervertebral disk is observed in 35% of subjects aged 20-39 years and in nearly 100% of those aged 60-80 years.

An important component of the degenerative process of the lumbar intervertebral disk is degeneration of the cartilaginous endplate. The cartilaginous endplate cannot be discretely identified on MRI because of its thinness and the chemical-shift artifacts at the endplate; however, MRI demonstrates reactive changes in the bone marrow due to the degenerative process in the diskovertebral joint associated with chronic repetitive stress. Disruption and fissuring of the endplate with granulation tissue and reactive woven bone result in endplate changes where vascularized fibrous tissue replaces adjacent marrow.

Type 1 endplate changes are characterized by decreased signal intensity on T1-weighted images and increased signal intensity on T2-weighted images. Disruption of the endplate with replacement of the hematopoietic elements in the adjacent marrow by fat result in type 2 changes. Consequently, type 2 endplate changes are nearly isointense with fat, have hyperintensity on T1-weighted images and isointensity or slight hypointensity on T2-weighted images. Type 1 changes appear to convert to type 2 changes over time. Extensive bony sclerosis with thickening of subchondral trabeculae results in type 2 endplate changes. Type 3 changes have decreased signal intensity on both T1- and T2-weighted images.

MRI and CT scanning have considerable false-positive rates and less frequent false-negative results.

Plain radiographs, myelography (of value only in patients with nerve impingement on moving or standing), enhanced or nonenhanced CT, and nuclear imaging cannot depict painful disks. MRI is helpful in showing changes in signal intensity generated by the nucleus pulposus and, occasionally, in adjacent vertebral bodies; however, the same types of MRI changes can be seen in lifelong asymptomatic individuals.
Both April and Schellhaus have suggested that HIZL observed on MRI may be a marker of a painful disk. However, findings from 4 independent studies of the clinical usefulness of HIZL as an indicator of a symptomatic disk are not supportive of this conclusion.

Provocation of concordant pain with lumbar diskography has been well demonstrated. The key feature of diskography is the patient's response to disk stimulation and not the appearance of the disk. Results of physiologic testing explicitly determine whether a disk is painful. Specificity of diskography in this regard has been well established by the work of Walsh et al. Because the only available diagnostic intervention that identifies a symptomatic disk is provocative diskography, this diagnostic tool should be ordered (or at least considered) before surgery.

Diskography remains controversial; some spinal physicians do not acknowledge its reliability or validity. Their contention primarily rests in a desire to prevent inappropriate surgery because of a potential to abuse diskography combined with the view, albeit unsubstantiated, that IDD represents a constellation of symptoms rather than a specific diagnosis. The value of diskography is debatable. Actual demonstration of disk disruption has been shown to be no more important than pain reproduction.

Electrodiagnostic testing (nerve conduction studies and electromyography) is warranted when their results may change the patient's therapy. In particular, electrodiagnostic testing is indicated (1) if patients have symptoms suggestive of cauda equina syndrome and their imaging studies are not diagnostic; (2) if imaging studies show an abnormality not consistent with the symptoms; (3) if such studies appear to be normal despite clinical suspicions; (4) if the clinician suspects focal nerve entrapment, polyneuropathy, or myopathic condition; and (5) if the clinician needs to identify which of several anatomic lesions in the spine is the cause of radicular symptoms.

If a malignancy is suggested, laboratory studies, including determination of the complete blood count, erythrocyte sedimentation rate, and alkaline phosphatase levels and serum protein electrophoresis, may be helpful. Conversely, if a rheumatologic etiology is considered, tests for antinuclear antibody, rheumatoid factor, uric acid, and HLA-B27 levels may be beneficial.


XIV. On alternative medicine

 

Taking Marie is a matter of faith, not a matter of science. In fact, there is no such thing as alternative medicine. It is a misnomer. So long as one understands that the effects of energy release (or whatever seemingly notable phrase is coined to give such sham therapies distinction and acceptance) is merely the same placebo one to be expected of a visit to a palm reader, one may throw away their monies at $80 an hour by reasoned choice. In the real world what these sessions do is alter perception of pain, and thus, to a much lesser extent, modulation of pain. But the pathology does not change, nor do the pain generators, nor is there a change in the movement of impulses signaling injury to the cord. One merely expects to get better, having traveled long distances and spent sizable sums, and therefore... perhaps... the mind is convinced some change has occurred.

I have a higher power as well, Christine. I go to Christ, and he is with me through all this. God provides his own placebo effect. But we do not call this science. We know how energy is produced by the body, the biochemical cycles that take glucose and run it through gluconeogenesis and the Kreb's cycle to provide our cells with adenosine triphosphotase. We know exactly how this cellular gasoline drives all the body's processes, including transduction and transmission in the pudendal nerve.
We know how inflammation makes heat and erythema. We know the genes that are responsible for Huntington's. What we don't know, because it is not possible to know, is how moving one's hands over another body can release energy. It might can be said to happen... one can say almost anything has happened, including the removal of potentially malignant cells (and see, you did not develop cancer)... but no one has yet developed a tool to measure such "energy". What would happen to you, Christine, if Marie made a mistake and released too much energy? Would you turn into a pumpkin, or perhaps have a recurrence of PNE? No, I'm sure Marie has the ability to move her hands in such a manner that the energy released is within the acceptable therapeutic limits, neither toxic nor insufficient. And that when she pulls you over onto her, at this point nerve healing could not possibly fail to occur.

My grandson says: whatever floats your boat. So perhaps that's applicable here. Only let's make it clear. Despite tens of thousands of studies, all conducted by alternative medicine proponents and none double blind, placebo controlled, the only efficacy to these types of therapies is the patient's faith in achieving a placebo effect.

 

XV. On prolotherapy and SIJD

 

This information might be relevant to your discussions regarding prolotherapy, tightening ligaments, SIJD, and relief of pain. In addition, the mechanism of action of prolotherapy in SIJD is discussed.

The key element in sacroiliac dysfunction diagnosis is pain. Many authors have attempted to define a typical pain pattern associated with the SIJD. Several of these reports describe patients reporting pain in one or both buttocks at or near the posterior superior iliac spine (PSIS). However, pain radiating to the hip, posterior thigh, or even calf has been described.

Patients often relate that pain especially worsens when sitting for long periods or performing twisting or rotary motions.

Pain quality: Pain is described as a dull ache or sharp, stabbing, or knifelike.

Pain distribution: Reported distributions are the buttocks, back of the thigh, and upper back; it can be unilateral or bilateral.

Pain that is worse in the morning (morning stiffness) and resolves with exercise: This pattern is consistent with an inflammatory disease.

Palpation may be the most reliable indication of SIJ pain. The patient usually places a thumb directly onto one particular spot in the dimple of the PSIS (sacral sulcus). The patient can usually precisely reproduce the pain over that one spot (Fortin finger sign). More diffuse back or buttock and leg pain should prompt the clinician to question the diagnosis of SIJ dysfunction.

Upon neurologic examination, motor strength, sensory examination, and reflexes in the lower extremities should all prove normal. However, sometimes strength examination proves challenging and the patient may exhibit weaknesses because of pain inhibition or frank muscle imbalance that developed during episodes of pain and relative inactivity. True neurogenic weakness, numbness, or loss of reflex should alert the clinician to consider nerve root injury or pathology other than a mechanical dysfunction.

It is a simple matter to perform pain provocation tests for SIJD. Distraction can be performed to the anterior sacroiliac ligaments by applying pressure to the anterior superior iliac spine (iliac gapping test). Apply compression to the joint with the patient lying on his or her side. Pressure is applied downwards to the uppermost iliac crest (iliac compression test). The goal of the Gaenslen test is to apply torsion to the joint. With one hip flexed onto the abdomen, the other leg is allowed to dangle off the edge of the table. Pressure should then be directed downward on the leg in order to achieve hip extension and stress the SIJ. For the flexion, abduction, and external rotation (FABER or Patrick) test, the examiner externally rotates the hip while the patient lies supine. Then, downward pressure is applied to the knee. In all tests, pain in the typical area raises suspicion for an SIJ lesion.

Unfortunately, although systematic, these tests have not proven reliable in controlled studies. Dreyfuss and colleagues studied 12 SIJ tests in relation to fluoroscopically guided SIJ injection. They were unable to find even one of these tests to be highly sensitive or specific for diagnosing SIJ pain.

Many patients state that the pain began spontaneously, while others can cite a specific inciting event. Bernard and Kirkaldy-Willis reported that 58% of patients diagnosed with SIJ pain based on clinical examination findings had some inciting traumatic injury.

Factors that specifically increase the likelihood of mechanical injury to the SIJ have not been identified. Pregnancy is one particular condition attributed to SIJ dysfunction. Yet certain biomechanical or muscle length imbalances may ultimately predispose a person to sacroiliac dysfunction and pain. Likely, this is a result of altered gait patterns and repetitive stress to the SIJ and related structures. These conditions exist in persons with leg-length inequality, scoliosis, a history of polio, poor-quality footwear, and hip osteoarthritis.

The use of imaging studies when evaluating sacroiliac pathology is a source of controversy among clinicians because whether normal and abnormal radiographic studies can help differentiate symptomatic versus non-symptomatic patients is unclear. This is probably due to the great variability in joint anatomy between patients. Additional disagreement exists on the significance of inflammatory findings and degenerative findings (sclerosis) being diagnostic of pain within the joint. The usual SIJ examination is performed using anteroposterior pelvis/lumbar spine radiography. Sclerosis or obliteration of the SIJ can be observed in older patients. Patients with AS usually have normal radiography findings; in older patients with this disease, the joint can appear fused.

CT scanning can often be used to document reactive spurring, sclerosis, or even subluxation. Many clinicians believe reactive spurring is due to prolonged abnormal motion within the joint.

Some clinicians view enhancement observed in the SIJ unilaterally in a patient with suspected SIJ conditions as an indicator of SIJ dysfunction or inflammation. In 1996, Slipman et al found nuclear imaging under these circumstances to be very low in sensitivity but high in specificity for sacroiliac-mediated pain. Painful SIJs were confirmed with an intra-articular injection of anesthetic. Therefore, bone scanning was of little value in the diagnostic algorithm for SIJ pain.

Adding single-photon emission CT scanning may increase the sensitivity of nuclear imaging for SIJ injuries; however, this has not been studied.

MRI is not generally used for evaluating the SIJ, although it can be a valuable tool to help exclude disk herniation (especially at L5-S1) as part of the SIJ dysfunction differential diagnosis. MRI can occasionally show inflammatory signs within the SIJ. MRI can also be used to investigate pelvic stress fracture, femoral neck stress fracture, or femoral head avascular necrosis.

Physical therapy focuses on pain control in the acute phase. Modalities such as ultrasonography with or without phonophoresis, deep and superficial heat, and superficial cold treatments can reduce pain. Neural therapies such as deep tissue massage, myofascial release, and muscle energy stretching techniques can also help. Pelvic myofascial stretching in the neutral spine position can be used for immediate, short-term relief of discomfort. By identifying activities that aggravate the condition, the physician or therapist can have the patient avoid these activities.

Although in the acute-phase muscle spasms may prevent frank manipulation, less aggressive techniques such as muscle energy stretching can be very helpful.

Patients may experience difficulty or even worsening symptoms with physical therapy treatments in certain cases. In these patients, reevaluate the diagnosis and consider other diagnostic possibilities (eg, infection, inflammatory disease, malignancy, neural [lumbosacral root] injury). Patients with acute inflammatory disorders or infections should not usually be administered heat treatments. Patients who cannot perform physical therapy may also have a functional component to their disorder or an underlying psychological disorder, which needs to be addressed.

Surgical intervention is rarely used for nontraumatic SIJ pain. Surgery is considered only in patients with chronic pain that has lasted for years, has not been effectively treated by other means, and has led to an extremely poor quality of life. The procedure is a fusion across the joint; however, although the surgery has been reported to result in benefit in selected cases or small case series, no randomized controlled study has shown reliable pain reduction with SIJ fusion.

In the acute phase, sometimes a local trigger point injection into the muscle can relieve symptoms.

If the pain does not resolve well in the first 2-3 weeks, an intra-articular injection under fluoroscopic guidance should be considered. SIJ injection is frequently performed with a mixture of anesthetic and steroid, as described by Fortin in 1994 and others. When the actual source of the patient’s discomfort is unclear, postinjection pain reduction offers significant diagnostic information. Fluoroscopic guidance is important because, while a local blind injection into the area of maximal pain can be temporarily effective, the needle rarely enters the joint. CT scanning or MRI can also be used to guide injections into the SIJ, with excellent reliability.

Günaydin and colleagues reported that 20 of 31 patients reported subjective improvement after the first injection and 9 of 15 patients reported subjective improvement after the second injection. The improvement lasted for a mean of 8.7 and 16.1 months for each group, respectively.

Luukkainen and colleagues reported that periarticular injection of methylprednisolone may be effective in the treatment of pain in the region of the SIJ in nonspondyloarthropathy patients from a study of 24 consecutive patients. Although these studies are promising, they are not randomized placebo-controlled studies. Therefore, before efficacy can be established, randomized placebo-controlled studies must be undertaken.

Even if the injections do relieve the pain, the relief from the injections alone is very often short-lived. Therefore, using the injections only as part of an interdisciplinary rehabilitation program is important. The pain relief offers a window of opportunity to increase the rehabilitation. The point in the course of recovery when a second or even third injection should be attempted is unclear. Most clinicians wait 2-4 weeks before proceeding with a repeat injection.

Manipulation has been reported in multiple studies as effective treatment for acute lower back pain. However, studies specifically on SIJ syndrome are less abundant. The SIJ is accessible to manipulation treatments and these may be extremely effective. As with other passive modalities, these treatments should be coupled with an extensive active rehabilitative program. Manipulation following intra-articular injection has been reported anecdotally to be beneficial in selected cases.

In chronic conditions, some practitioners believe that SIJ pain is due to hypermobility of the joint, which occurs because of laxity in the ligamentous complex. Prolotherapy is a series of saline and glucose injections applied to the SIJ ligaments to cause an inflammatory reaction, which results in scarring and tightening of the ligaments and a reduction in pain. However, no satisfactory outcome investigations have been performed on prolotherapy for this condition.

A newer procedure, radiofrequency denervation, has recently been advocated for the treatment of especially recalcitrant sacroiliac dysfunction. The procedure was thought to be ineffective for SIJ pain because the innervation to the joint is so diffuse. However, Gevargez and colleagues recently reported that 3 months after the procedure, 13 patients (34.2%) were completely free of pain. Twelve patients (31.6%) reported substantial pain reduction, 7 patients (18.4%) had slight pain reduction, and 3 patients (7.9%) had no pain reduction. No longer-term follow-up data are available; further study is needed.

The recovery phase cannot proceed without an active, aggressive rehabilitation program. Often, SIJ injury leaves patients with significant deconditioning and muscle imbalances. These functional muscular deficits were sometimes present before the injury and may have predisposed the patient to injury. Some muscles are known to be functioning in a tight or shortened position, such as the hip flexors, hamstrings, tensor fascia lata, obturator internus, and rectus femoris. Other muscles are weak or inhibited, such as the gluteal and abdominal muscles.

The initial goal of physical therapy should be to correct any mechanical or leg-length asymmetries (eg, orthotic/shoe lift), stretching overly tight lumbopelvic muscles, and strengthening weak and inhibited muscles. All of this should begin in the neutral spine position or a pelvic position, which minimizes acute discomfort. Then the patient should be asked to take on more challenging tasks while progressing through the program. Stabilization exercises are performed with the patient in a more dynamic, functional position and often include balance and proprioceptive activities. Strengthening of the core muscles surrounding the spine can be achieved in various ways. Recently, Pilates training has become very popular for this purpose. Finally, the patient should graduate to sport- or work-specific training designed to return the patient to his or her prior level of functioning.

In patients who develop chronic injuries, an SIJ belt can provide compression and feedback to the gluteal muscles. Patients with ligamentous hypermobility can especially benefit from this apparatus because the belt can reduce SIJ rotation. The belt differs from a generalized lumbar orthosis because it is much thinner and thus secures across the anterior superior iliac spines.

The outcome in this disease is usually good if properly diagnosed and treated.

 

XV.  On a proposal to evaluate responses to neuropathic analgesics 

 

1.

 

Medicine does approach the unknown with trial and error, but it is my hope we can significantly reduce any dependence on trail and error with a two pronged approach to neuropathy and pharmacological modulation. Let me present the idea and see if there is agreement.

Approach 1. Theory. A review and assessment of each step in the pain process, an understanding of the mechanisms involved with each step, especially the cellular and molecular basis for each... from which we devise a medication strategy which attacks at multiple levels simultaneously. This approach is based on the assumption that the combined effect of medications will be far greater than the sum of each medication, an assumption we can pose with some confidence because in most research models this is what is found.

Approach 2. Clinical results. This approach requires the participation of forum members, providing fairly detailed information regarding their personal experiences with medications. We need to know drug, dose, pain response on the visual analogue scale, duration of therapy, response graded by time over the course of therapy, combination therapies, side effects, and reasons for discontinuing medications. Each drug can then be scored. From a large pool with vastly different treatment histories, where providers have many different approaches, and where there is no outside financial influence, we should be able to arrive at helpful conclusions regarding meds. Remember, it is doubtful that any one of us has had a treatment plan based on combinations the work might suggest, so prior failure of one or two agents in an individual patient should not cast doubt on the ability of these drugs, when used to augment and supplement the actions of other drugs, carefully targeted, to work.

Then we compare both, our molecular based strategy with our clinical conclusions. If they are close then we may have hit the jackpot. Even if they are not close, look at how far we will have come. Besides, we already know that clinical responses might be significantly different if the right mixes can be found. While Approach 2 provides a clinical check and balance, it is not an absolute one. Yes, necessity is a mother of invention. What deserves inventiveness more than neuropathic pain?

 

2.

 

Yes, those are the types of questions. But unlike so many analysis based on case histories in the medical literature, this one needs to be valid. The way that we are starting out helps make it so because we have no preconceived notion, and therefore a bias, to prove. Instead we are only looking for the truth ... which medications have worked best among a very diverse treatment population. Validity does not come easy, but it is not only possible, it is imperative to finding dependable answers.

It is probably best that we divide labors and efforts into cells. Those members with data assembly skills, like Amanda, can work on the clinical studies side of the equation. Members whose interests lie in the fundamentals can contribute to the research side. Everyone who has or have had pain needs to help with information.

As I have written, we could score medications based on response to neuropathic pain in our forum group. For these scores to be valid, the pain scale upon which we depend for comparison must be carefully explained and well understood. Data should also be given validity ratings. By that, I mean that a member who has no other medical condition other than PNE, who is post decompression surgery, who takes a single drug and achieves a 40 % reduction in pain within two weeks, with substantial analgesia lasting for months, the data from that member would receive a validity rating of A. A member who has many co-existing illnesses, and takes all manner of drugs that are independent of the medications taken for pain, then depending on those drugs and those conditions, the data from that member might have to be rated with a "B" validity.

That in no way, shape or form demeans the value of the data, for it is as valuable to us as any other. But in order to maintain validity, we must consider the impact of other drugs and illnesses on the true effectiveness of the analgesics taken at the same time. I will attempt to explain why this matters in our search for the truth.

Most drugs are bound to plasma proteins once they enter the blood through the walls of the small intestine. Plasma proteins then act as carriers, toting medications to the site for which they are intended. The degree to which all drugs bind to these transport proteins is variable ... some drugs are very tightly bound during transport, others barely at all. (There is little magic to this. The Physician Desk Reference gives the state of plasma binding in its description of the pharmacology of every drug explained in the book). Basically there are two types of transport proteins, albumin and globulins. For the most part, drugs that are acidic bind to albumin while those that are basic in pH bind to globulins, although there are some drugs that bind to both.

You are wondering what could this possibly have to do with the effectiveness of a drug for pain. In order for a drug to get to the cord, or the brain, it has to cross a membrane, called the blood-brain barrier. Drugs that are bound to these plasma proteins cannot cross the blood brain barrier, therefore they are pharmacologically inept. You can take as many as you want, but unless they are freed from plasma binding, you will not get a clinical response. So if a member has a medical condition that changes the amount of circulating transport proteins, or is taking a medication that affects the number of binding sites available for the transport of other drugs, such as the analgesic, or the membrane stabilizer, so that the medication cannot get to its site of action, then the true effectiveness of that medication would not be completely valid as reported. The degree of validity would depend on the circumstances.

Drug binding is affected not only by other medications, but also by things like pregnancy. Older folks like myself have decreased protein concentrations and thus the drug available for activity at the receptor is increased. Diseases like renal failure, liver failure and uncontrolled diabetes lead to changes in the ratios of bound and free drug. Other medications taken by a member might compete with the analgesic for binding sites and either decrease or increase the amount of drug that makes it across the blood brain barrier.

Central to truth is validity of data. Central to validity is obtaining information on medical history and other medications.

As far as dose response, we could provide a time line, sectioned into each month, looking at a time frame going back as far as data can be considered reliable (by memory). The time line would give room for dose adjustments, medication additions and eliminations


Med
______________________________________________________________________

Response

On the response side of the line members would be encouraged to provide not only pain scores, but some indication of the effect of medications on daily function. Important to our overall strategy is reducing pain while permitting functional recovery.

 

3.

 

As proposed, the work on neurotransmitters and nociceptive modulating receptor sites is on-going. Phase two requires input from a good many folks on the forum (or guests) who have neuropathic pain. The strategy of phase two is to rate pain response to various medications, determine if these numbers are statistically significant, and construct a combination medication package which can then be compared to the cellular model with respect to efficacy.

As discussed in a post above, it is important that the data receive quality of data scoring as well as analgesia scoring. In order for that to occur without bias, a protocol will be developed to use in the analysis of data. In order to protect the confidentiality of members contributing data, I suggest that Karen and Greg select three members of TIPNA whose integrity is beyond doubt (and would have the confidence of members). The data to be requested from forum members who choose to contribute to this study would then be PMed to one of these three members, who in turn would de-personalize the information (by giving it a number rather than a name). Then the information would be forwarded for analysis.

A separate topic will be created so that members can follow results as data is accumulated. The topic will be edited weekly with new and total numbers. Members should not view this topic until after they have completed the questions and PMed either of the three members selected for de-personaliztion of data (in order to prevent bias in answers). It would probably be best to wait until the end to present data to the forum, but an up to date accounting of data received might spur more interest in contributing.

The following is a list of proposed questions. Readers are encouraged to suggest additions or modifications.

1. Please list your given diagnoses and approximate date of diagnosis (any chronic medical conditions):

(Reason for question: some medical illnesses affect absorption, transportation, and or metabolism/elimination of medication, so these may affect quality of data scoring.)

2. Please give the diagnosis of the illness that is felt responsible for your neuropathic pain:

3. Please list any surgical procedures you have had and the approximate date of the procedure:

(Reason: some surgical procedures (eg.subtotal gastrectomy) may affect the manner in which medications are absorbed or metabolized, thus affecting quality of data scoring.)

4. Give the approximate date of onset of this illness (first symptoms):

5. Give your age/sex:

6. Give those factors which you feel may be responsible for this illness (eg. vaginal hysterectomy, cycling, etc):

7. Please give a history of your use of medications taken to address pain (since the date of onset of illness given above). Please include the dose of medication, any dose adjustments, any untoward side effects that required the dose be reduced or the medication discontinued. Please include any other medications taken at the same time as the medications for analgesia, including the dose, the reason for the medication, and whether or not the medication was continued or discontinued.

Please rate your pain and response to medications based on the visual analogue scale as given below:

no worst
pain pain imagined
__________________________________________________________________
0 1 2 3 4 5 6 7 8 9 10