Health Organization for Pudendal Education

Hope your last attempt does help Matt.
Good luck with it all and enjoy your break.
Take care,
Helen

4th July we have last apointment with prof. Aszmann before the summer.
We will probably set up the date for PSSD testing late August and I will ask him about the possible dates for operation. I perfectly know all the risks but things are getting toward the dorsal nerve decompression.
I am struggling with this condition more than 2 years and my quality of life is lately pretty miserable. The pictures both from 17Mhz ultrasound as well as from 3MRI point toward the entrapment of nerve in dorsal canal. there is a scar, fibrotic thickening and pelvic congestions.
Trying to complete the puzzle, I remember when my pain started back in 2009, there was always:
-pin and needles in the distribution of dorsal nerve
-prevaliling the right side, althouhg later the pain became bilateral
-always DELAYED pain, which is for me maybe the crucial indicator - pain came ALWAYS 2-3 days later than stimulus (sex, physical labour). This is not typical for CPPS. When I was on one of my first exams with prostate, pelvic muscles etc, everything was fine, pain was only in distribution of dorsal. Later of course, all the pelvis became painfull by rectal exams.
I asked two of the most renowned specialists in Czech republic for the pelvic uro-surgery and neurosurgery about dorsal nerve decompression.
Here are the qoutes: "Dorsal nerve decompression is not without risks, but it is the best chance to solve your problems" (L.Jarolim MD)
"If you have confirmed diagnosis of dorsal nerve entrapment and prof. Aszmann recommends operation, I would advise you to go this way. He is absolute top neurosurgeon. In general, surgery is the only sustianable solution, all the conservative measures only postpone the operation. Wishing you that everything goes fine" (J.Sedy MD).
Have all the summer to take the toughest decision of my life.

Sending every good wish I can muster, whatever you decide Matt.

Wow, Matt, I'm sorry you have come to this difficult decision. I guess my question to Dr. Aszmann would be has he had any successes with the dorsal nerve surgery and if so, how many. You are probably well aware that we haven't heard of any successes on this board and I'm sure that is not making your decision any easier. Does Dr. Aszmann have any ideas on how to keep scar tissue from forming in the area after surgery?

Hope your vacation is relaxing and gives you the opportunity to sort all of this out in your mind.

Best,

Violet

Thanks Violet, for your opinion. Yes I know that the results are mixed or ambiguous, but I would not say they are entirely negative.
Johannes, that guy from Sweden is completely cured. A´s mommy benefitted hugely from the very complicated operation, Chrisse the guy from German section has reported significant diminishing of pain after 3 months of surgery, one of my internet friends from Czech republic had been decompressed 3 weeks ago (dr.Aszmann said our cases are somewhat similar) and is reporting huge progress. Maybe others who dont contribute to our forum have similar experience. If I remember correctly, pn_down_under the guy from Australia who had enourmoously complicated multiple entrapments, is after 6 months reporting significant progress.
On the other hand, there are people, who did not neither cure nor benefit, Ali being maybe the most prominent one.
dr. Aszmann said, that 75 % of patients are cured or significantly improved, 25% remain the same (without worsening).
I tried everything, PT, hot baths, multimple pills and medical aids, massages, rest etc etc....Nothing made the things significantly better.
I dont have any urinary problems, no ED, no other pelvic issues, no sensitivity problems, only chronic rather neuropathic pain in the base of penis, going exatly from the point where the mechanical compression is suspiced. Mechanical nature of my injury (neuropathic delayed pain after mechanical input - sex, physical labour) is pointing toward the entrapment problems. 3T MRI was able to visualize that spot and even I was able to see compressed right canal (very distinctive when compared to left side) and am persuated that this is the problem spot. If there was any other possibility to release the nerve, I would do it. But there is obviously none. In the beginning of my pain, late 2009 early 2010, the pain was the same pattern as now, same intensity and no physiotherapy helped. Only cure was a rest - when I was lucky enough to be able sleep whole weekend, the pain completely dissapeared. This is not indicative to any CPPS, vaso-muscular issues etc. I did it that way till maybe autumn 2010 (still being able to fully recover, but area was tender, but completely bearable situation), then after prolonged sex I probably gambled with my destiny once too much....Pain became chronic. Then ECSW completed my ordeal - chronic pain with no remissions.
I am prone to believe, that if I am able to have erecetion, have all sensitivity on my genitals, have no bladder/urinary issues, no sitting pain, only slight perineal tenderness - that my dorsal nerve is not fully disfunctional - maybe decompression will bring full recovery.
I was contemplating the idea to get full pudendal nerve block to both Alcocks - to confirm diagnosis. dr. Aszmann said there he would not suggest to enter Alcock (which is always potentially dangerous), when there is clearly no pathology there (no Tinel sign, no sitting pain, nothing). He would surgically adress that bottleneck spot is distal dorsal canal, which is clearly the only pathology in my case.
That is my situation, any opinion is welcome.

Matt, I don't really have an opinion, I just like to ask lots of questions to get people to think.

Your explanation makes complete sense and it is nice to hear that there are some who are recovering well. I hope that you will be one of the lucky ones with a complete recovery.

Best,

Violet

I'm in a similar situation Matt, tried everything available, nothing has helped long term. I have never had a spell with no PN or PS problems but a couple of years ago I had flu and had to spend about 3 days in bed. Afterwards I did notice that my pain was diminished for a while, although all of the numbness never changes ( just gets more dense in places, with activity)
I doubt that anyone would advise you one way or another but I also know that an op is the only chance of a possibility of a solution for me.
Take care,
Helen

Update>

2 hours ago I had blind corticosteroid shot into the pubic area done by my urologist. Hope that steroids will kick in and help me for 2-3 weeks like last summer. my urologist was very careful with the needle placement /I stressed to him not to injure dorsal nerve/, he placed the injection little bit lateral from the position 11 (if you imagine wathches it is little bit lateral from the vertex) , which should be quite safe spot.
I feel some numbness on the skin of pubic area. Penile glans is perfectly sensitive, no numbness so at laest I am sure that he did not hit dorsal nerve directly. Hope that steroids will kick in within 2-3 days and some of them will also calm down dorsal nerve.

wishing nice vacation to all, I ll be sporadically present on the web.

M.

Any relief from the injections?

flyer28 wrote:Update>

2 hours ago I had blind corticosteroid shot into the pubic area done by my urologist. Hope that steroids will kick in and help me for 2-3 weeks like last summer. my urologist was very careful with the needle placement /I stressed to him not to injure dorsal nerve/, he placed the injection little bit lateral from the position 11 (if you imagine wathches it is little bit lateral from the vertex)

M.

Hi flyer 28, Hope the injection is working? How far distal from the base of the penis? 1 cm?

My pain(at its worst) travels down into the pubic area (a small spot on what feels like the pubic bone getting close to what feels like the spermatic cord or some connection to the left testicle).Pain then radiates also up what feels like the left bowel but could be the inguinal canal.
I think I understand what you mean by 11 oclock. My small spot of intense pubic pain is more at one o'clock (anterior view).

Cheers and hope you enjoy your mountain vacation.