Health Organization for Pudendal Education

Hi I'm new to the forum and a PNE sufferer for three years now following a horse bucking incident . There was a sharp electric like pain in my pelvic area and then after my penis had lost a lot of feeling and my orgasms were very weak. I started to develops sit pain over the next few months but beginning at a year after the incident i could not sit even for a second. I was diagnosed by dr Antolak with PNE after three courses of injections ,then had an MRN and surgery with dr Filler Without any relief. I then went thru the 6 day 'Headache in the Pelvis ' clinic in San Fransisco. All of this with no improvement . My sit pain is severe and my penile numbness is progressivly getting worse.i find any bending ,going up stairs or too much walking causes my numbness issues to progress.
I have a September 19 Potter MRI in NY and then an Oct24 appointment with dr Hibner but i recently emailed dr Azsmann who felt my symptoms of numbness fit dorsal nerve compression. He said the success rate for treating numbness and sit pain is ' Very high' with the dorsal nerve decompression surgery. He could see me in September but i wish to see dr Hibner first for his opinion.
I'm wondering what advise others would have on a wise direction forward? Alli Pasha had somthing similar .
Thank you all for this forum! I am a 44 year old father of 5 with my sweetheart of 21 years and this PNE has been quite a life changer.

Earl,
Your history mirrors mine. I also went through the Wise clinic and had surgery with Filler. In addition I had dorsal nerve surgery that did not help at all. I would suggest that you proceed cautiously with the dorsal decompression. I truly do not know where the long term dorsal decompression success stories are.

Hi Ezer, so who did your dorsal nerve surgery?

Earl,
It was Dr.Dellon. I posted in the following thread about my experience.
http://www.pudendalhope.info/forum/view ... =44&t=2420

Welcome to HOPE Earl sorry, have nothing to offer with regard to surgery but I hope that you are able to get enough information to make a good decision about how to proceed from here.
Take care,
Helen

Thank you Helen, the one thing I've read here on the forum is that if one has tried the more conservative treatments without resolution, surgery is a cure some of the time but not doing surgery is never a cure . The question is ,who and what surgery.Maybe I'm missing something ,I hope I am, but It seems that way.

I have another question In regard to the dorsal nerve decompression surgery . Those of you had the surgery with good initial results for a few weeks or months ,did you retain any benefit at all like less numbness or anything else when your pain returned?

Hi Earl,
I'm sorry to hear that you are suffering so much. Have you tried any PT? I'm not sure what the headache in the pelvis clinic entails. What about any medications to help with your sit pain? I'm just trying to think of conservative measures that have helped me so far. The blocks didn't seem to do much for me either, but the new PT I am seeing combined with cymbalta/lyrica have greatly improved things for me while I am waiting to talk with the hip doctor. You might also think about seeing Dr. Andrew in Canada for ESWT. I know it has mixed results, but some people have completely moved on with their lives after treatment. He is a great resource for PN info, even if you just want to email him and talk to him for free.

So, sometimes "not doing surgery" is a "cure." Just something to think about and options to try before going towards surgery.

Hugs,
Jackie

Earl,
I derive no benefit whatsoever from the dorsal decompression surgery. In fact it is the opposite as the dorsal nerve ending is hypersensitive now.
I believe that I am not the only one. Pelvis stressly and Ali have reported the same.

Hi Jackie and those who responded!
The Headache in the Pelvis Clinic is an indepth training course on personal PT. Ive tried it but it seems any activity or using/stretching/PT,of the muscles and nerves, only make my symptoms worse. Ive tried pain meds;gabapentin,amitriptyline,valium,vicodin,and others without any improvement in being able to sit.Besides i feel it would only damage the nerve more yet if i were to sit with the false impression that my pain level would allow it.I truly agree that surgery succes is very poor but i dont want to wait till i am totally numb to try to find a solution. it seems less likely for there to be a recovery the longer one waits. I have no penis pain but steadily worsening numbness and my sit pain keeps me in at home because driving is impossible .i havent worked for 2 years to speak of . Thank you all for your support!