Health Organization for Pudendal Education

Hello tonygret,

Im new in this hard journey, i just wanted to ask how do you feel after surgery, and i wanted to send you lot of positive energy, you will recover 100% for sure.

It has been a little over six months since my surgery in Nantes France with Dr. Ploteau. As a reminder, the doctor said it would take three to six months to recover to the point where I would be back to where I was before surgery. It has been a long, painful six months.

I believe I am honest with myself at this point, and I am confident in saying this surgery has been a complete failure. I am not saying that because i am not 100% better and I expected my PN to be gone. I am saying that because not only is my pain worse, almost double, but I now have new pains in places I never had pain before. I also have new symptoms that have made daily life unbearable at times.

I realize some will say it is too soon to tell. But I know my body. I have had other surgeries, open heart, spine, and brain. I even had a stroke, and I rebounded in record time from each. I also know these new symptoms simply won't just vanish. In fact, they are worse than my original symptoms by a wide margin.

To make matters worse, Dr. Plotaue has stopped responding to me. I have not been sending manic desperate messages. I sent two emails. I was only asking for advice and information for my doctors here in the states. It appears Dr. Ploteau, like some others in this profession, cannot tolerate knowing they had a failed surgery. They dismiss their failures as the patient being psychologically ill in some way. I guess that's how they can tout 100% success rates.

Here in the states, the doctors think that the surgery caused more damage to the nerve. I have an MRI scheduled in the next few weeks to see if there is anything that can be done, but my guess is I am out of luck and options here.

I was hell-bent on getting this surgery done after researching this for almost 3 years. I thought I made the right choice and would probably have opted for the surgery no matter what. So here we are.

As for others contemplating surgery, I will caution you; there is no going back. Dr Ploteau assured me he never had a patient get worse in over 200 surgeries, which is what pushed me over the edge to move forward. I didn't imagine in 100 years I could get worse, but I did. That doesn't mean all surgery is bound to have this outcome. All you can do is research, ask questions, and make your own decision.

I think this will be my last post on this subject unless anyone posts a comment that requires a response. Also, I will, of course, do an update if I have a miraculous and spontaneous recovery.

Best of luck to all.

Same for me. 2 failed PNE surgeries!!

Man oh man, that is bad news...hate to hear it. And now the doctor has stopped responding? Thats crazy. So sorry to hear about this whole deal, all the travel and expense only to end up worse? I recall you saying your nerve was entrapped by vessels rather than ligament and it was a very difficult surgery taking 3hrs. Did you know it was the vessels rather than ligaments prior to surgery? Do you think that has something to do with your poor recovery? Any theories as to why this surgery hasn't worked? I followed this whole thread having just joined the forum and was really hoping for your recovery and now this. Hang in there and I pray for some pain relief for you.

tonygret wrote:It has been a little over six months since my surgery in Nantes France with Dr. Ploteau. As a reminder, the doctor said it would take three to six months to recover to the point where I would be back to where I was before surgery. It has been a long, painful six months.

I believe I am honest with myself at this point, and I am confident in saying this surgery has been a complete failure. I am not saying that because i am not 100% better and I expected my PN to be gone. I am saying that because not only is my pain worse, almost double, but I now have new pains in places I never had pain before. I also have new symptoms that have made daily life unbearable at times.

I realize some will say it is too soon to tell. But I know my body. I have had other surgeries, open heart, spine, and brain. I even had a stroke, and I rebounded in record time from each. I also know these new symptoms simply won't just vanish. In fact, they are worse than my original symptoms by a wide margin.

To make matters worse, Dr. Plotaue has stopped responding to me. I have not been sending manic desperate messages. I sent two emails. I was only asking for advice and information for my doctors here in the states. It appears Dr. Ploteau, like some others in this profession, cannot tolerate knowing they had a failed surgery. They dismiss their failures as the patient being psychologically ill in some way. I guess that's how they can tout 100% success rates.

Here in the states, the doctors think that the surgery caused more damage to the nerve. I have an MRI scheduled in the next few weeks to see if there is anything that can be done, but my guess is I am out of luck and options here.

I was hell-bent on getting this surgery done after researching this for almost 3 years. I thought I made the right choice and would probably have opted for the surgery no matter what. So here we are.

As for others contemplating surgery, I will caution you; there is no going back. Dr Ploteau assured me he never had a patient get worse in over 200 surgeries, which is what pushed me over the edge to move forward. I didn't imagine in 100 years I could get worse, but I did. That doesn't mean all surgery is bound to have this outcome. All you can do is research, ask questions, and make your own decision.

I think this will be my last post on this subject unless anyone posts a comment that requires a response. Also, I will, of course, do an update if I have a miraculous and spontaneous recovery.

Best of luck to all.

Tony,

I am so very sorry. Your post makes me want to cry. Please know that you have brothers and sisters with damaged pudendal nerves who are suffering along with you. If you ever need to talk we are here for you. I don't understand God and why I am forced to live like this but sometimes it helps just to know that you're not alone in your grief. I lost the person I once was, and intimacy with my spouse - so it's a death of sorts and I've gone through periods of grieving for the person I once was, so there is an emotional component to these injuries.

I'll be praying for you Tony. God said "Ye shall seek me and find me when ye search for me with all your heart." Even if doctors cannot help, we can look to God who created us - to see why this injury has befallen us and what He wants us to do. He must have a reason. Maybe you're chosen for some special work to do from home on your computer. I urge you to order the book "Steps to Christ" - it was what helped lead me to God. I don't understand Him at all - why I'm being forced to live in excruciating pain but I'm searching for what He is doing in my life and what work He has for me to do.

God bless you.

Hello,
I was also operated on for pudendal and cluneal neuralgia by Professor Ploteau in Nantes (France) and my life has been hell ever since:
- urinary leakage, absence of urge to defecate, loss of sensation of the passage of stools and urine,
- anorgasmia, numbness of the penis and anus,
- part of the buttocks is completely numb,
- permanent tightness of the cluneal nerves and feeling of sitting on the bones.
My initial state of health is incomparable with that of today. I had the misfortune to trust this Professor so like tonygret I wanted to bring my testimony and warn you.

Hi Dave,

Thanks for sharing your story. I'm sorry to hear you are doing worse now. How long ago was your surgery? Is there is a chance you might still improve with more time?

Violet

Thanks Violet.
It's been over a year and I recently had an EMG of the pudendal nerves which showed denervation (demyelination).
The cluneal nerves were also damaged during the surgery as they cause me constant painful stretching.
Infiltrating these nerves would be too risky as they are very close to the pudendal nerves and could accentuate the numbness (and associated symptoms).
So I no longer have any hope except that of an assisted suicide in Switzerland...
Beyond a lack of mastery of the surgical gesture by this surgeon (replacing Professor Robert) and this surgical technique much more invasive and risky than announced, I was, like Tonygret, particularly shocked by the behavior after the surgery of this surgeon (unable to question himself) and the algologist who works with him for many reasons...
Hence my testimony and to warn the sick.

Hi Dave,
Thanks for sharing your story. I'm so sorry. I had surgery 4 years ago and the healing process was up and down and very very gradual. In fact, I sometimes think I may still be very gradually improving. And I've heard others report that their post-surgery healing took a very long time. What have the doctors said about how long they think it may take to heal? Do they think the numbness will go away? Years ago, I injured my finger and it went numb for a long time, but I gradually regained most of the sensation. This is likely a different kind of injury, but in some cases nerve sensations does come back.
Take care,
April

Thanks April.
I no longer have any hope because over time there is even an aggravation of the symptoms related to the denervation of the pudendal nerves.
I preferred to sever all ties with the surgeon. He did not include all of my complaints in the medical reports because he seemed more concerned about not having to jeopardize his insurance than about my state of health. Pay close attention to the so-called doctor or better avoid him.