Health Organization for Pudendal Education

Wow, sorry Jim. I can definitely empathize with what you are going through and totally agree it's no fun. There are people who have successfully applied for disability. You don't have to look at it as permanent because many people do get better and get back to work, myself included.

Take care,

Violet

That is pretty high to not have much help. I think 3600 was the high end and certainly I am no doctor and maybe Violet will have a better idea but it may be time to try something else?

Well, some people have reported that a cocktail of several drugs like gabapentin (or lyrica) with cymbalta, and a benzo help more than just one drug. Of course you hate to drug yourself up too much but it may be important to keep the pain at bay while you are searching for a more permanent solution so that you aren't as likely to develop central sensitization or permanent changes to the brain/spinal cord. http://www.ncbi.nlm.nih.gov/pubmed/23405082

Violet

Well I talked to the pain management people today and they said my nerve block verified that my issue is most likely the pudendal nerve. My choices are: conservative methods to include PT and medicine, neurostimulston or surgery. I am only 2 months into this sitting pain. Any opinions on what my next move should be? My dilemma is my pain had been caught early and should I move on this now?

Jim, it's a really tough decision. Some of the PN docs have said in interviews (my interview with Antolak and Stephanie Prendergast's interview with Dr. Hibner) that you cannot tell for sure if the nerve is entrapped unless you have surgery, so at this point there is no way to know if you have a nerve entrapment or not. Your history may give some clues but nothing has been proven to diagnose PNE with 100% accuracy yet.

Once you go in and have surgery there is no way to put things back together exactly like they were before. Based on my own experience with surgery, it's not easy to go through and I would only do it again if I was in serious pain and was willing to risk getting worse. If you haven't already, you could give PT a try for 6-12 sessions, and if you are seeing significant improvements then continue with it. I know that some of PN physicians tell patients that if you wait too long you are less likely to have good results from surgery but it doesn't seem like a few month's difference in time would make much difference in the outcome if you are careful in limiting your sitting/bending/squatting, etc.

Whether to try neurostim or PNE surgery is really an individual decision. Personally I wanted to try the option of surgery to see if that would give the nerve a chance to heal, keeping neurostim as an option if surgery failed, but some people are just really opposed to surgery.

Violet

Jim, as Violet said, what to do next is always a tough decision. Trying a course of pelvic floor PT is always good just in case the issue is really pelvic floor dysfunction or some type of structural misalignment that could be corrected by a chiro. Some individuals get their pain at a level they can live with using conservative treatments like medications, PT, limited sitting, etc. Depending on the PN surgeon some won't do pudendal decompression surgery unless you have tried pelvic floor PT.

Violet and nyt, thanks for the words of advice. I am definitely going the conservative route for now. PT and small periods of test sitting is my plan for now. I plan to stay away from the message board for awhile to not stress about what is going on. Internet obsession can be my worst enemy.. lol. Again thanks for the support.

regards
Jin

Good luck Jim. Keep us posted now and then.

Violet

Hi Tucson,
You are near Hibner, the best - and Loretta, his PT person. Consider yourself blessed for you have something which was nonexistent a few years ago. We returned to San Antonio after a tour at the Pentagon (found I needed surgery for a spinal surgery which never fused; it was coming apart - literally and we chose to have it done in TX instead of Washington (big mistake). The surgeon was excellent but nobody in the USA had really been trained in PNE. In medical school, an urologist looks at a cadaver for a few moments and move on. We do not have bike races in the country, therefore no accidents to learn from, i.e., Pr Robert of Nantes, FR. After two years of agony, no help in Dallas in diagnosing the PNE which developed on a surgery table - a second spinal surgery and I was turned over and the pelvic girdle did not cooperate during the "turn over" and it resulted in PNE. My back did not bother me compared to the new pain I left the hospital with from the leg exercisers to prevent blood clots after surgery. Nobody could help me for two years. I lived (after losing 30 pounds immediately) by the head of the pain clinic at UTMC at San Antonio injecting lidocaine into the right part of my bottom twice a week to numb it so I could stop the spasms and keep down a half a sandwich. I had had six spinal surgeries at that point. I finally called Mayo in MN and they told me to be there in a week. I was diagnosed by Dr. Antolak and stayed there for three months for PT (conservative treatment) and wound up going to France for surgery in December 2002 and there were 11 Americans having it done all together. The story goes on and on. I posted the results under my name today. You are near an excellent set of doctors in Phoenix and that is near. Nobody rushes into surgery. I waited too long for a diagnosis and needed Physical Therapy much earlier. Greg T. was in charge of TIPNA and it was a blessing to us. A patient of Hibner's recommended re-surgery and I listened. It had grown back together. Hibner modified the surgery by listening well - to his patients. I think I was Hibner's 30th patient in fact. I wish there were more qualified Physical Therapy people to help us but there are not. Amy Stein of NYC - very good and Loretta (Hibner) - are the only two I could recommend. Unless they were trained in PNE, (mine was not) I would not recommend one. You are near - so near - help. I drove 65 miles each way twice a week for PT which did not help here. Greg drove 100 miles for his. If you have to be ill with PNE, you are near help; a lot of us are not and never have been. You will get help there. Loretta is now part of Hibner's staff I understand. People worked for her for the past 12 years and were trained by her/Hibner. An examination by her or her staff is necessary for Hibner to evaluate for PNE, unless the procedure has changed. She is good - very good. You can get help so easily. Try getting it. Illness is an inconvenience and can be a disaster if not attended ASAP. Many of the eleven who went to France - had had PNE for two, five, or ten years, etc. by the time they had any idea of what had happened to them. They had to search for answers on their own, spending money they did not have, losing jobs due to this illness and their marriages coming apart at the seams. If you have to wait for Hibner's office, try to see one of the trained people by Loretta Robertson. Find out what you have first, then proceed. You will be okay. It is not convenient, but you have resources close to you. Lie on a mattress in the back of a van (mattress tied down to the frame under it) so you can travel easier and go. The people at the Barrow Clinic in Phoenix helped Hibner work on me and it did help an awful lot. Pain control. I needed to go back, but due to funds, could not. Flights are expensive. As I say, you could not be in a better place to get PNE. Use it, please. You will make it. Carlie

Carlie,

Did you have improvements in your pain after Dr. Hibner's redo surgery? It sounds like you have been through a lot and I hope that you are feeling much better. Thank you for sharing your experience.

Sincerely,
Stephanies