Health Organization for Pudendal Education

Ezer,
Thanks for posting on your surgery with Dr. Filler. While I'm sure it must have been difficult to detail your disappointment, it provides valuable info for anyone considering Dr. Filler. Sorry to hear about your results. It sounds like Dr. Filler's approach is inadequate to address the entire nerve. A more complete procedure may yet yield the outcome you desire. My experience with PT Liz Rummer was similar in that she basically discounted surgical intervention.

All My Best,

Don

I want to make clear that Dr.Filler never promised a cure. I believe that he was sincerely trying to help. He was always pleasant and supportive.
Unfortunately his thought process was flawed in my case and his MRN not very reliable in my honest opinion. At the end it was a failure. If I truly had piriformis entrapment (rare but happens), the surgery would probably have been successful. I am puzzled by the amazing statistics to be honest. It does not compute.

In regards to why the entire nerve was not decompressed, it has to do with the laparoscopic approach. The TG incision is tiny and is probably less than an inch long. He probably can only access the area by the incision which was the piriformis in this case (He uses a lower point of entry for the Alcock's canal).
He cut a bit of the piriformis and cleaned the nerve around that area. He also decompressed the nerve to the obturator internus. I am not exactly sure what else he did. But if you look at the traditional TG surgery, the glute is cut several inches to give access to the entire nerve. it just doesn't compare and the laparoscopic technique Dr.Filler uses has well documented limitations regardless of his skills.

Kris, to answer your question why I think the entrapment was located. All my failed blocks in the past ended up with the genitals numb but the pudendal pain still present (meaning the pudendal nerve was correctly affected by the numbing agent but the entrapment was still producing pain elsewhere).
The nerve block last week made the genitals numb and the pudendal pain decrease also which I read as the pudendal nerve and the site of compression were located.
I have not decided yet on a surgery team but I speak French so I don't see any problem going to France for example. I also want to mention that the "interventional pain specialist" that gave me the nerve block is against PNE surgery and wants to steer me toward neuro-stimulation.

Thanks for the update, Ezer. I'm sincerely sorry it wasn't better news but you are obviously a fighter and not about to give up.

Just curious why the interventional pain specialist is against surgery. I can see why he wants to do the neurostimulator because that puts money in his pocket but does he have a good argument or reason as to why to avoid surgery?

Violet,
Thanks. She heard from a urologist that deals with chronic pelvic pain patients that the surgery is not working. I'll try to learn more and maybe also try to meet that urologist to understand the concerns. It was certainly not a direct experience.
It is not that neurostimulators are risk free either.

Karyn, HM, Don, A'mommy, Charlie, Kris, Don,
Thanks for the support. Don -you reported Liz bashing surgery but it is not that they have many success stories to show. I also was a patient there and heard the same discourse and rhetoric regarding surgery but they did not cure me and I know of no other cure. I heard people that have benefited from their treatment after surgery which is valuable but outright PT cures, I never heard of that. None of us have jumped into surgery as it is a last resort option but it is not that those PTs are offering great alternatives so they shouldn't judge us.

It was pointed out on another website that Dr Filler has some terrible reviews on http://www.ratemds.com

Hi Ezer,

I'm told why pain specialists choose stimulation .
The most important thing is that they do stimulation ! and they know how it works .

I met numberous of them and indeed , they always point out that PN surgery is very risky compared to stimulation.
Ok , no treatement is without risk and stimulation starts from the fact PN is not curable anyway , not without taking to much risks.
Also stimulation is not a cure in itself but its highest aim is having alot less pain , sometimes even none .

They (like VB) point out that when stimulation should not work, they just take it out before the trial periode is gone, restoring everything as it was before .- no harm done !
They always told me they see lots and lots of ex surgery patients they are a last resort for but sometimes are confronted with cases that are very difficult to treat as a result of surgery . in other words ...surgery is the reason why they have a unsolvable case ..

It's always the same ...everyone has his own trued , even supported by their own 'scientific' proof .
In between us , the unknowing patient that only can try what we trust enough .

I think it's a valuable option if you think the risk of release surgery is just to big or you had it to try !

Kris