Health Organization for Pudendal Education

Ok, thanks a lot for the info Griff522 (I know this stuff isn't easy to discuss, to say the least!).
PS

Griff,
Thank you for sharing your results with Dr. Dellon. It takes a lot of courage to post when your news is not good. This is valuable information for anyone who is considering Dr. Dellon especially those whose insurance pays nothing towards his bill. Thanks again. Wishing you all the best.

Don

Very briefly to those considering shockwave therapy>
I tried it in Ferbruary and it inflicted horrible flare-up of pain for me, would never repeat it.
I have pains at the base of penis, and my orthpedist persuated me to have a ESW wave to inguinal ligament which left me
with really strong pain for 3-4 months /aggravation from 3-4/10 to 7-8/10 and it took almost half year to get back to baseline pain.
all the other uro-experts told me that ESW is contraindication in pelvis.
Would never do it again.
M.

So sorry to hear of your bad experience. It's really frustrating to take the advice of a drr for treatment and then end up feeling worse!

My chiropractor's new machine is very different than the old one. Here is a link to the new machine http://www.richardwolfusa.com/eswt-tpst.html. One of the things that she pointed out to me is that the treatment should not feel painful. She said that there is no more benefit if the level is higher and painful. So she made sure that she was finding the trigger point but that the pain level I experienced was in a very tolerable range.

Hi Everyone, This is a long thread, but I have read a lot of the posts on here. My theories on why some people have gotten initially better for a few months but then their pain returned are 1. The nerve maybe finally woke up after surgery and then the pain returned 2. There was scar tissue that formed around the nerve after the nerve was initially freed from the scar tissue from surgery 3. There may be another area of the Pudendal Nerve that was not decompressed 4. An anatomic abnormality could have caused the nerve to be compressed again. These are all just ideas and possibilities I thought of as to why maybe this happens not only with dorsal but with TG surgeries. The most plausible one would seem to be that scar tissue redevelops around the nerve as a result of the body's response from surgery on the affected nerve. I wonder if Hibner's neurawrap may help with this, or if a Laparoscopic surgical approach would help minimize scar tissue if indeed this is the true cause of the nerve pain coming back?
Shawn

Another reason individuals do well after surgery and then by 2-3 months back to square one is mostly likely due to all the anesthesia medication has worn off thus the return of pain. this fits very well with what I personally experienced and from what other pain doctors have told me.

Hi nyt,
That is also another possible cause. I guess there are many causes. If anybody else has any ideas for the possible causes, or any success stories to tell with Dr. Dellon for PNE feel free to post.

Shawn

nyt wrote:Another reason individuals do well after surgery and then by 2-3 months back to square one is mostly likely due to all the anesthesia medication has worn off thus the return of pain. this fits very well with what I personally experienced and from what other pain doctors have told me.

Good point NYT! Central nervous system sensitization is possibly a HUGE missing link to this whole PNE and pelvic pain battle in general. Once that anesthesia is out of the system BAM the CNS winds back up tight and thus begins the vicous pain cycle again. I'm interested to see the results of Ketamine treatments on some of forum members in the future (good luck NYT!).

Ali, Sorry to hear that you're not feeling better. I have decided not to have surgery with any PNE doctor.I don't want to have surgery just to get 3 or 4 months relief and then it comes back worse than before surgery. I may try physical therapy again.I want to find a physical therapist that specializes in pelvic floor problems.

reading through this enigma again and again...
I feel that this crucial question of dorsal nerve decompression surgeries must be resolved somehow: why on earth after initial imrovement majority of sufferer got worse again?
I guess this pain pattern is especially typical for dorsal nerve decompression, I got the feeling that the classical TG cases are rather very painful immediately after operation and than got eventuelly somehow better, although it can take years...
Results from dorsal decompressions are rather dissapointing, despite the surgeon brilliancy of dr. Dellon and Aszmann.
But there is a hope - at least some people referred to significant decline of pain after dorsal nerve operation - that means there must be a tool how to supress this pain. This will be maybe solved in the future with better visualization and more approachable placement of injection during the blocks...maybe there will be some agent surpressing the pain for months even years..
Even now there are some patients whose pain is sympathetically based benefiting from superior or inferior hypogastric plexus block for 8-10 months, which is a great achievement...
Maybe laparoscopic approach will be the next step in the dorsal decompression surgery...
I dont know. The only positive thing for me right now is the fact that I am here among extraordinary skillful colleagues, I mean all of you on this forum. I learned a lot and learning every day. Maybe somewhere in the future there is a way out for all of us.