Health Organization for Pudendal Education

I'm not exactly sure what brought me back to the Pudendal boards other then to offer a message of hope to all that are going through the agony brought on by PNE. My story goes back to 2000-2001: After seeing the usual multitude of doctors I ended up at the Mayo Clinic with Dr. Antolak. I went thru the series of 3 injections which didn't help. Dr. Antolak told me I had PNE and suggested I go off to France to have surgery. As desperate as I was, and in as much pain as I was in, I didn't see that I had a choice. At that time I simply emailed Pr. Robert direct - got a response - a date and time to show up in Nantes. At that time there was a very small group of Americans interacting on the web regarding PNE. In any case, I'm not exactly sure how, but we put together a group of I think 4 or 5 of us and got on a plane and off we went (drugs and all) to Nantes. While in Nantes we were all put through more tests (there is the standard test -- I've forgotten the name of it but I'm sure you guys know what's is referred to as.) After the tests we each had a private meeting with Pr. Robert and Dr. Bensignor. For some reason my case was so bad that they said immediately after surgery I was to be put in Dr. Bensignor's pain clinic. The truth is that I thought the pain was unbearable pre-surgery but OMG the post surgery pain was what I called 'suicidal pain.' The 'suicidal pain' lasted and lasted and lasted. As I look back I question myself how did I ever get through it? I was so desperate post surgery that I returned 3 times for week long stays in Dr. Bensignor's pain clinic. Dr. Bensignor was an absolute saint. He was a wonderful man and an even better doctor. He was so good to me. The treatment 'slow drip ketamine' I couldn't find in the states. I mentioned it to my pain doctor and he laughed at me. That's why I kept going back to France, Still desperate 2-years post surgery I went back again to see Dr. Bishop combining that stay with a week long stay in his pain clinic. They just kept pumping me full of Ketamine - day after day after day. Finally back home I think I start feeling little twinges like I'm starting to feel better. I'm thinking could it really be? Somehow - thru time - trips to France - a miracle -- I'm not sure to this day I am 100% better - just as I was before any of this happened when my wife and I used to ride 50 miles on our bikes and think nothing of it. It's been years since I've visited the Pudendal site. This is simply a message of hope and encouragement to all that read this - you can get better. I followed my instincts and it happened to work out. I think if I hadn't returned again and again to the stays in the French pain clinics I question if I would of gotten better. If I can get better so can you. There is hope - don't ever lose it.

Larry, thank you SO much for posting this message of hope. What a tough time you had, and what an amazing outcome. How long was it, following surgery in Nantes, before you achieved significant relief, and could sit? All the best for the future!

Thanks for the post. I cant imagine more pain than now after surgery, that is the one which frightens me always.

What a lovely thing to do Larry, thank you so much We know so much more now than when you embarked on your 'pioneering' flight to France, and of course there are a few more surgeons who are able to address pelvic nerve pain, thank goodness. Have fun .
Helen

Thanks much for sharing your journey to wellness. It is also great to hear all the good, bad, struggles and ugly of getting well as it gives us all HOPE.

Larry;
Thank-you for your story. It is a message of hope and we all need it. I'm scheduled for surgery in Nov and I'm scared to death but reading letters like yours makes it a bit easier.
Don't stay away so long. Keep us posted on your amazing recovery.
Thank-you;
Doreen

Stephanie P wrote:Larry, thank you SO much for posting this message of hope. What a tough time you had, and what an amazing outcome. How long was it, following surgery in Nantes, before you achieved significant relief, and could sit? All the best for the future!

Stephanie I would say about 1 year or so after I returned home after seeing Dr. Bishop I found complete relief...so, about 3 years post surgery. They told me, if surgery was going to work that it would take 3-5 years. A few months prior to my last visit to France my local pain doctor was out of options (I was taking those green Oxycontins - 40mgs and a lot of them) and I was almost out of my will to live, and so again out desperation they implanted a pain pump. Morphine dripping down my spine. One of the side affects of an implanted pain pump is a tumor can grow on the tip of the catheter - which is exactly what happened - more permanent spinal nerve damage - I lost the use of my right leg and my right foot - I can't move it. Basically total disaster. No choice, but to return to France again - what I expected to gain I don't know - hope of some kind I suppose. This time it was different. They literally pumped Ketamine into me around the clock. Not a slow drip. I admit my last experience in France was a blur. I do remember the very first time after I returned that I thought something was changing. I was almost as though 'something' fell within my buttocks. That's the best I can describe it. From that point things improved on a steady basis. Every day I am grateful. The fact that I don't have the of my right leg or foot was in my mind a small price to pay to come out of such incredible pain. Hope -- just never gave up hope. I believe hope is just about everything.

To God be the glory for your healing, Larry! And thank you for your message of HOPE!!!! Are you aware of any other country where Ketamine is used frequently?

A's Mommy

A's Mommy, if you go to Facebook and look for Ketamine Klub you can get a list of dr.'s in the states that do inpatient and outpatient Ketamine infusion. There is alot of information on that FB group about Ketamine. The most well-known is Dr. Schwartzman in Philadelphia and he was the pioneer in Ketamine but the wait to see him can be up to 2.5 years. There are other great Ketamine physicians that trained under Dr. Schwartzman on the East Coast. I have an appointment to see Dr. Hertz in NYC in October as he is a RSD specialist that does outpatient Ketamine. Not sure what he will recommend but I am hopeful that will be part of the treatment. When I spoke to Dr. Hibner over a month ago it looks like Phoenix will be doing its first Ketamine Coma in the near future. Not sure I am interested in that route yet if I can try Ketamine in other settings less dramatic. Far as I know Phoenix will be the only place approved for Ketamine Coma in the states otherwise it is Germany and Mexico.

Hi Larry, Thanks for posting your success story for giving us hope. I do have one question. Do you think it was Dr. Roberts surgery or Dr. Bisshops surgery which caused you to get better, because it seems as if based on your story that you started to get better within one year after surgery wth Bisshop in France? Also, you may want to also post this on the success story topic on this board, but you don't have to
Shawn