TIPNA

[carmela b]

HI,
I HAVE WRITTEN BEFORE AND SINCE I HAD RADIO FREQUENCY OF THE LUMBAR SPINE ON JAN, 8TH 2009. I AM SO FRUSTRATED I JUST DON'T KNOW WHAT TO DO ANYMORE. FOR 3 DAYS I HAD 50 TO 60% RELIEF AND I WAS THRILLED. LAST NIGHT THE PAIN CAME BACK WITH A VENGENCE AND IS WORSE THAN WHEN I STARTED THIS. CAN ANYONE OUT THERE TELL ME WHAT THERE EXPERIENCE HAS BEEN WITH RF. I FEEL AS THOUGH I MADE EVERYTHING WORSE AND WONDER IF I CAN GET BACK TO WHERE I WAS A WEEK AGO. THE SPASMS, BURNING, ETC. IS SO SEVERE IT IS MAKING ME SICK TO MY STOMACH. I KNOW I CAN STILL HAVE IMPROVEMENT FOR 2 TO 6 WEEKS BUT SOMEHOW I DOUBT THAT WILL HAPPEN. I DON'T KNOW WHAT TO TRY NEXT I AM HOPING FOR RELIEF FROM MY PAIN.
I HAVE NOT BEEN ABLE TO SIT FOR THREE YEARS AND CAN ONLY LAY ON MY LEFT SIDE BUT I DON'T EVEN FEEL LIKE I CAN DO THAT NOW. I KEEP STANDING BUT I CAN'T DO THAT ALL NIGHT. I WOULD APPRECIATE ANY ADVICE ANYONE HAS TO GIVE.

THANK YOU AND I HOPE YOU ARE ALL FEELING AND DOING WELL.

CARMELA

[Payne in Alaska]

I have never tried radio frequency, but what I have heard is that the frequency can damage nerves even more if treatment is non-effective. I believe this treatment is technically called Ablation of the nerve. I had surgery with Dr. Conway, eight months post op with pain level no were it was preoperative date. I use morphne 60 mg three times a day and neurontin 600 mg twice a day (six to eight hours a part, use during active time of day). I see a physiatrist (dr. who specializes in pain). I wanted him to give me a shot, but he won't until I've healed more for anti=inflamation process can bring on positive scar tissue that decrease pain level. Have you had surgery? I went to Conway for he does the conservative approach through the vagina. This approach spares other ligament, and less evasive to prevent damaging other nerves and resulting into more pain or incontinents of fecal or urine. Would hate to wear diappers all my life at age 52 and not feel when I needed to go to the bathroom, these are the possiblities of trans-glutal approach and cutting both ligaments. My area of compression was the interligamenous space PMLT 2. I hope that helps. I hope your doing better. Life seems really hard for you now, unable to sit, stand, etc. I was like that before surgery, I'd flop around in bed like a fish out of water.
_________________
Marie Josee, Conway Patient: PMLT 2.9, after surgery 0.79. Trans Vaginal approach. Left sided PNE and Ilinogunial Neuropathy 5.8 MLT. Surgery 4/09 in NH. Pain symptoms started 6/8.

[carmela b]

HI, MARIE JOSEE,

THANK YOU FOR WRITING RE RADIO FREQUENCY. I HAVE HAD IT TWICE TO REDUCE VAGINAL AND RECTAL PAIN AND ALSO FOR (COMPLEX PAIN SYNDROME) NEITER PROCEDURE IT HELPED BUT IT DID NOT MAKE IT WORSE. FOR ME I WOULD NOT TRY IT AGAIN. I HAVE HAD SOME RELIEF FROM THE INJECTIONS IN THE PUDENTAL NERVE SEVERAL TIMES. IT HAS GREATLY REDUCED MY SPASMS WHICH IS AMAZING TO ME. ALSO, I HAVE NOT BEEN ABLE TO SIT DOWN FOR THE LAST FOUR YEARS AT ALL. SINCE THE INJECTIONS I CAN SIT TWICE A DAY FOR 15 MINUTES WHICH MAY NOT SOUND LIKE MUCH TO ANYONE BUT FOR ME IT MEANS HAVING A MEAL WITH MY FAMILY WITH OUT STANDING AT THE COUNTER. NOW THAT THE HOLIDAYS ARE HERE I AM EXCITED ABOUT SITTING AT THE TABLE WITH EVERYONE. I HAVE NOT HAD THE SURGERY AND I AM RELUCTANT TO DO THAT SINCE I HAVE HAD 6 BACK SURGERIES AND HAVE A LOT OF NERVE DAMAGE. I SPEND MOST OF MY DAY IN BED, I CAN'T TRAVEL OR VISIT WITH PEOPLE OR GO OUT SHOPPING I AM JUST AFRAID IF THERE IS PROBLEMS WITH THE SURGERY I WOULD BE MORE DISABLED. I AM IN TOUCH WITH SOMEONE IN ARIZONA (I CAN'T REMEMBER HIS NAME ON TIPNA) BUT HIS WIFE HAS HAD SURGERY ON BOTH SIDES AND THEY ARE SORRY THEY DID IT. SHE IS MUCH WORSE THAN WHEN SHE STARTED AND IS BED RIDDEN. I HAVE NOT READ MUCH POSITIVE ABOUT THE SURGERY TO MAKE ME CONSIDER IT. I WISH YOU LUCK YOU ARE TOO YOUNG TO GO THROUGH THIS. I AM 66 AND HAVE BEEN REALLY DISABLED FOR TEN YEARS NOW.

GOOD LUCK AND IF YOU CAN PLEASE LET ME KNOW WHAT YOU DECIDE.

CARMELA

[peg]

carmela,

I had radiofrequency of my vaginal cuff area vaginally. It made my pain level soar even higher! It didnot help my pain levels once the flare-up subsided. I wouldn't do this procedure again. I also had cryosurgery. It helped tremendously. Unfortunately, it only lasted for about 3 months! I am still looking into the LION surgery (laparoscopic implant of neurostimulation). I am hoping to talk with someone with the lion implant. I am like you for i have been through so many procedures. I am running out of options. Take care my friend!


Peg
_________________
peg

[Celeste]

[Payne in Alaska]

I'm 51years of age. We are all unique, I was telling you my experience. I 'm glad to hear you were able to be with family during dinner, that is great improvement. I hate to eat in bed, I told my husband when I'm able to sit for a meal, do not ever bring me breakfast in bed. I hate all the laying down, I layed down for 2 years, I'm now, after 9 months later, am able to sit, but not long enough to work yet. Hopefully that well come with time.
_________________
Marie Josee, Conway Patient: PMLT 2.9, after surgery 0.79. Trans Vaginal approach. Left sided PNE and Ilinogunial Neuropathy 5.8 MLT. Surgery 4/09 in NH. Pain symptoms started 6/8.

[carmela b]

DEAR MARIE JOSEE,

I HATE EATING IN BED I USUALLY STAND UP AND EAT. I AM JUST HAPPY TO EAT SITING FOR 15 MINUTES TWICE A DAY. THE RADIO FREQUENCY DOES NOT HELP THAT MUCH BUT THE INJECTIONS IN THE PUDENDAL NERVE I GO EVERY SIX WEEKS. I HAVE CHANGED MY MEDS AROUND AND NOW I TAKE MORPHINE SULF 30 MG 4 TIMES A DAY. I ALSO TAKE XANAX TO HELP ME SLEEP AT NIGHT. THE NEUROLOGIST I SEE, DR. JORDAN, IN SANTA MONICA, CALIFORNIA HAS BEEN TREATING PNE PATIENTS FOR 31 YEARS. I AM HAPPY TO BE HIS PATIENT HE HAS HELPED MORE THAN ANY PAIN SPECIALIST I HAVE SEEN IN OVER TEN YEARS. I KNOW I WILL NEVER BE PERFECT. SINCE I AM MUCH OLDER THAN YOU, ALMOST 67, I KNOW I WON'T EVER WORK AGAIN I JUST WANT TO BE ABLE TO GET OUT AND BE MORE INDEPENDENT. I PRAY THAT THINGS WILL GO VERY WELL FOR YOU SO YOU CAN SIT AND GO BACK TO WORK. ALL OF OUR PROBLEMS ARE UNIQUE AND IT HELPS TO HEAR WHAT OTHERS ON TIPNA DO FOR RELIEF.
I WISH YOU THE VERY BEST.

CARMELA

[GregT]

[carmela b]

DEAR GREG,

AFTER SEVEN YEARS WITH A PAIN SPECIALIST IN THOUSAND OAKS CA I DCIDED TO TRY DR JORDAN SINCE HE SPECIALIZES IN PNE TREATMENT. I HAVE HAD RADIO FREQUENCY SEVERAL TIMES WITH NOT VERY GOOD RESULTS. AS SOON AS HE STARTED PUDENDAL NERVE INJECTIONS IT REALLY HELPED MY CONSTANT RECTAL AND VAGINAL SPASMS AND BURNING. DR. JORDAN ALSO GAVE ME A, KETAMINE, IV DRIP FOR FOUR HOURS. THAT SOMEHOW CHANGES THE PAIN RECEPTORS IN THE BRAIN TO BLOCK THE PAIN. INSURANCE DOES NOT PAY FOR IT AND THE COST IS $2,000. IT IS A VERY STRONG DRUG AND A NURSE IS ASSIGNED TO YOU FOR THE ENTIRE PROCEDURE. SOME PEOPLE HAVE A REALLY BAD TRIP WHILE ON THIS DRUG AND CAN GET AGGRESIVE AND HALLUCINATE. LUCKILY FOR ME I DID NOT HAVE THAT EXPERIENCE. ONCE I CAME OUT OF IT I SAID A LOT OF SILLY THINGS AND WAS REACHING FOR THINGS THAT WERE NOT THERE BUT THAT SUBSIDED ONCE I GOT HOME. YOU MUST TAKE KETAMINE PILLS FOR TWO OR THREE MONTHS MADE AT A COMPOUND PHARMACY. IT DID HELP MY PAIN FOR SEVERAL MONTHS. WITH THE COMPINATION OF PROCEDURES HE HAS DONE I HAVE HAD THE MOST IMPROVEMENT I EXPERIENCED IN AT LEAST TEN YEARS. I AM ON MORPHINE , NAMENDA AND XANAX AND ALTHOUGH THEY DON'T HELP 100 % I HAVE IMPROVED.
I DO HAVE A LOT OF PROBLEMS DUE TO SIX BACK SURGERIES SO MY LOWER SPINE IS FUSED. I ALSO HAVE SCOLIOSIS SO I CAN'T STAND UP STRAIGHT AND I USE A WALKER. ALSO I AM 66 YEARS OLD AND I AM GRATEFUL FOR THE HELP I AM GETTING. WHAT HAS DR. JORDON DONE FOR YOU? MAYBE YOU CAN ASK ABOUT THE KETAMINE IT MIGHT HELP.
I WISH YOU THE BEST AND PLEASE LET ME KNOW HOW YOU ARE DOINGL
THE PAIN AND SUFFERING IS MORE THAN MOST OF US CAN HANDLE AND IT GETS VERY DEPRESSING AND IT CAN BE DIFFFICULT TO REMAIN POSITIVE. I JUST PRAY FOR RELIEF EACH DAY AND HOPE IT WILL COME TO ME SOME DAY.

CARMELA

[GregT]

Carmela,

I mentioned on my post above what Dr. Jordan did for me. The PN injection (first time I saw him, 2001) is what diagnosed me and led me to have surgery in France. The surgery hasn't been so successful, so that's why I've seen him for a couple of other treatments since then. I like him a whole lot and think that his mind is really way ahead of others regarding the treatment of difficult pain.

My main problem now is mostly muscular pain. I'm not sure if it's just muscular or if the nerve is still provoking it. I'm looking to get more pain relief somehow.

Thanks for your response and continued good luck.

Greg
_________________
Had PN surgery in France in Dec, 2001. Sitting is a bit better, but I still have muscular pain in much of the pelvic area. Never had pain on one side or the other, just in the middle.

[carmela b]

GREG,

YOU SHOULD THINK ABOUT THE KETAMINE IT MIGHT REALLY HELP YOU. I HAVE MUSCLE AND NERVE PAIN BUT NOTHING REALLY HELPS MY MUSCLE PAIN. I THINK INACTIVITY MAKES THE MUSCLE PAIN WORSE. I KNOW I WOULD BE A CANDIDATE FOR THE SURGERY IN FRANCE BUT I HAVE NOT HEARD MANY PEOPLE HAVE BEEN HELPED BY IT. IT IS DIFFICULT TO KNOW WHAT TO DO.
I AGREE THAT DR. JORDAN IS WAY AHEAD IN PAIN MANAGEMENT EVEN DR. ASSIL IN THOUSAND OAKS THOUGHT IT WAS GREAT I WAS GOING TO JORDAN BECAUSE HE HAS AN EXCELLENT REPUTATION.
DR LAPAROTY (SP) TREATS ANOTHER FRIEND OF MINE AND HE TOLD HER THAT DR. JORDAN IS A GENIUS WHEN IT COMES TO PAIN MANAGEMENT.
I WISH YOU THE BEST AND IF YOU TRY ANYTHING NEW I WOULD LIKE TO HEAR HOW YOU DO.

CARMELA

[GregT]

Carmela,

I'll let you know if I do anything with Dr. Jordan. I've lost email contact with him (he changed his email address). I'd love to know it because I don't live there and I don't want to just call up and set up an appt. I want to be able to exchange a few emails with him before I go all the way there to spend a lot of money.

If you happen to know his email address, would you send me a PM?

Also, you say that you're a candidate for surgery and that you could go to France. Does this mean that you couldn't go somewhere in the U.S.? I've seen many people cured from their PN pain. I've exchanged emails with a lady who was cured from surgery in Houston and she's never made a post on Tipna. Those of us who stay on the forum are in large part the ones who are still looking for pain relief. I know that Dr. J. is down on the surgery, but that's also because he sees a lot of the ones who don't get better. No one who is cured from surgery sends a letter to Dr. J. letting him know that they've been cured from PN surgery.

Thanks.

Greg
_________________
Had PN surgery in France in Dec, 2001. Sitting is a bit better, but I still have muscular pain in much of the pelvic area. Never had pain on one side or the other, just in the middle.