Health Organization for Pudendal Education

Does anyone know if there is a list of patients who had surgery and how many surgeries, and became re-entrapped with scar tissue?

Just wondering if anyone has tried decompression surgery for the THIRD time.

I know somebody that had 3 PNE surgeries. It did not work.
You can't keep doing the same and hope for a different outcome. Not all pelvic pain presentations are due to nerve entrapment.

Who did the surgeries? Did the surgeries confirm entrapment?

It is always reported to be entrapped.

Look, I am still entrapped at the alcock's canal (surgeon ran out of time and suggested a third surgery) and I am pain free now.
Don't assume pain means tissue damage. It is much more complicated than that.
My finger is a solid block of scar tissue (My finger was chopped and put back on but I can't bend it) but it gives me no pain.

nonsequitur wrote:It is always reported to be entrapped.

There have been people who posted that they were told by the surgeon after surgery that they were not entrapped. So it is not a foregone conclusion if you go into surgery that the surgeon is going to find an entrapment.

If scar tissue is a problem after the first and second surgeries it would make sense to consider it a possible risk after a 3rd surgery too unless the surgeon is taking a different approach that can minimize scar tissue.

Violet

Violet,

I corresponded with many patients that had surgery with the 2 PN surgeons I selected for my surgeries. In fact we were comparing notes before and after surgery. We were all found to be severely entrapped. Not just entrapped, but severely entrapped. None of us were improved by surgery.

I am not aware of a single patient that was found not entrapped. I can't find anybody on this forum. It is highly suspicious.

It is pretty crazy for Dr. De Bisschop to offer surgery because the pudendal nerve block did not work when Dr. Robert has the exact opposite criteria. It is all just vacuous hooey.

Jaxi123, do you think you might be an individual that makes a lot of scar tissue after surgery? I am of mixed ancestry, my PT commented to me after my last surgery that it appeared to her that I make a lot of scar tissue and might be due to some of my African American ethnicity. I recently found out that I have very high levels of Transforming Growth Factor Beta 1 and this is involved in fibrosis formation. I do not know if the level was elevated at the time of my surgeries so can't say if it may have played a role in the amount of scar tissue formation she noticed in my scar. Just throwing some possibilities for you to think about.

nonsequitur wrote:I corresponded with many patients that had surgery with the 2 PN surgeons I selected for my surgeries. In fact we were comparing notes before and after surgery. We were all found to be severely entrapped. Not just entrapped, but severely entrapped. None of us were improved by surgery.

There were some patients who came back from Nantes who were told they didn't have an entrapment. They posted on the old tipna forum. My comment wasn't regarding the success of surgery. Just pointing out that not all surgeons say everyone is entrapped.

I'm not sure it would make sense to consider PN surgery if I had absolutely no relief of pain even for a short period of time (several hours) from a pudendal nerve block -- that is if the block caused a temporary loss of sensation or numbness in the distribution area of the pudendal nerve indicating that the medication hit the correct spot.

Violet

Violet,

I believe that you consulted with only one PN surgeon, Dr. Bautrant. He is pretty serious from the brief correspondence I had with him.

I consulted with 6 PN physicians. Seeing some of them multiple times. I got fed conflicting explanations repeatedly. Some were badmouthing their colleagues telling me that they got it all wrong. They all seemed to have contempt for a certain PN doctor for his lack of proper surgical skills and finesse (he used to videotape his surgeries and made them available).

Now that I have some distance from that taxing period, I realize that what they told me about my case was speculative hogwash. This field is marred by unseriousness.

Therefore reading gabriel81's experience with de Bisschop recommending surgery because the pudendal nerve block did not work when Dr. Robert says the exact opposite is yet another proof. It is just completely random. Again.

The more obscure symptoms seem to attract a certain category of doctors. Often they think they have made some great discoveries and the rest of the world is ignorant or against them. It reminds me of Dr. St. Amand that claimed guaifenesin could treat fibromyalgia symptoms by removing phosphate from the body which was pure baloney. Yet he was taken very seriously at the time.

The only doctor that was rational in my case was the top uro at Kaiser (Stanford grad) that told me that he did not know what my problem was and that western medicine could not solve it besides pain relief. He was fully aware of the "French doctors" as he put it and the PNE diagnosis but warned me to be very cautious.

I can't help it but to be cynical about the ordeal.

I believe you are right, Ezer, that Dr. Bautrant is serious. I know of at least one person he sent home to the US whom he did not think was entrapped. I did consult with other PN surgeons before going to him though, including going to see one of them before going to Bautrant. So I didn't take the decision lightly, and personally, I would only consider surgery if my quality of life was so bad that I was willing to risk getting worse. In my case it paid off but obviously it's not the answer for everyone.
Violet