I'm not exactly sure what brought me back to the Pudendal boards other than 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 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 weeklong 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 have gotten better. If I can get better so can you. There is hope - don't ever lose it.........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 effects 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 use 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.