Surgery/treatment dilemma

[Zachco]

Hello , PN_down_under
When visiting Dr de bisschop for his clinical PN investigation, he told me, if there is only an entrapment in alcock canal produces no pain and symptoms are only incontinence. Maybe I misunderstood him ,but I'm pretty sure that's what he told me. he also told me his treatment is good for erectile dysfunction. I didn't ask farther questions about both subjects because my only symptoms is pain.
Another thing he explained me is that the entrapment causing the blood circulation difficulty on it's way coming back, therefor a very swollen vein can be seen along the nerve. This make me think that maybe your nerve can be inflamed under the ligaments ,but entrapped at the ligament or even above.
I might be talking nonsense but I wanted to share what I remember from my conversation with Dr de B and thought it could be helpful .
Maybe you can try to contact him and ask him about it. Usually he is very friendly and he answers mails but questions should be short and clear. English is not his first tongue .

[PN_down_under]

An update for anyone who may be interested.

I have been in contact with Dr Oskar Aszmann, who has reviewed my case and MRI, and the results have come back as:

"Today I have looked at your MRI Images with my radiologist. Rarely have we seen such clear pathology around the dorsal nerve. Impressive!
If your problems continue, you should really consider to have your dorsal nerve decompressed."

I am quite pleased, as this is what I have always suspected, I just wasn't able to get a doctor to confirm it. Finally it is there in black and white! As it has been close to 8 months with minimal improvement in symptoms, it looks like I will persue the dorsal nerve decompression surgery through Dr Aszmann in Austria.

I would just like to thank all those on the forum who have brought Dr Aszmann's surgery option to our attention. Without this knowledge I would continue to be in the hopeless situation I have been in for the past 8 months.

It's been a good day!

[helenlegs 11]

Wow, that's absolutely fantastic. So glad you have that image information and can now address the problem. You were so right to do some research for yourself. Keep us informed how you progress. Have you looked at Ali's pictures http://www.pudendalhope.info/forum/view ... &start=400. Maybe you shouldn't !
Well done down under, I'm so pleased.

[PN_down_under]

I am now 2 days post-op from distal pudendal nerve release surgery, performed by Prof Aszmann in Austria, and feeling pretty good. It is too early to tell if the surgery has been a success but Prof Aszmann was very confident and excited, as he "has never seen such a clear case of nerve compression in this area" and is 100% sure that he has found the problem. He has shown me pictures of my nerve which clearly show the nerve changing from normal thickness to "huge" and then back to normal. The position of the thickened nerve corresponds exactly to where I could feel the friction when walking and where the pain seemed to originate from (and also where the bicycle seat would have caused the initial injury). He says that pain through the penis and scrotum was referred pain.
Therefore I am hopeful that the worst is now behind me.

I will concur with other comments on this forum about how wonderful and caring Dr Aszmann is. He has likely given me back the next 50 years of my life.

[Lernica]

Thanks for posting your progress, PN Person, and good luck with your recovery! Please do keep in touch even if you get all better! We need to hear about success stories too!

[PaulSa]

I am now 2 days post-op from distal pudendal nerve release surgery, performed by Prof Aszmann in Austria, and feeling pretty good. It is too early to tell if the surgery has been a success but Prof Aszmann was very confident and excited, as he "has never seen such a clear case of nerve compression in this area" and is 100% sure that he has found the problem. He has shown me pictures of my nerve which clearly show the nerve changing from normal thickness to "huge" and then back to normal. The position of the thickened nerve corresponds exactly to where I could feel the friction when walking and where the pain seemed to originate from (and also where the bicycle seat would have caused the initial injury). He says that pain through the penis and scrotum was referred pain.
Therefore I am hopeful that the worst is now behind me.

I will concur with other comments on this forum about how wonderful and caring Dr Aszmann is. He has likely given me back the next 50 years of my life.

Great news! Please keep us up to date on your recovery. I'm surprised this was caused by no direct trauma but most likely from the bicycle seat.

[helenlegs 11]

Great! referring to your last sentence PN_ I certainly hope so Keep us updated.

[PN_down_under]

I'm surprised this was caused by no direct trauma but most likely from the bicycle seat.

Well, the bicycle seat is direct trauma is it not? It was just over a long period of time, rather than a one off incident.

Here is a copy of the surgery findings, as given to me by Prof Aszmann:

"We have done a bilateral neurolysis of the pudendal nerve. Intraoperatively we found both nerves entrapped in the pudendal canal. Both nerves showed signs of chronic nerve compression. The left pudendal nerve had a significant pseudoneuroma with some internal scarring. Both the roof of the canal was very fibrotic and there was marked varicositas vessels alongside the nerve. The right pudendal nerve also showed a pseudoneuroma but not as pronounced as on the left side. In both nerves an additional epineurotomy was performed under the microscope."

[Lernica]

How are you feeling, PN Down Under?

[PN_down_under]

Hmmm, it is hard to say exactly. I can say that the nerve seems to have more tolerance than before surgery, and I had no significant nerve pain after surgery until a day or so ago. The one flare I have had was from helping a mate to move some heavy furniture and things for a couple of hours. Probably a silly thing to do, seeing as I was only 2 1/2 weeks post-op, but I assumed that the surgery had removed the aggravating compression from the nerve, so it should be fine. Anyway, it seems like the worst of the flare was only over one night and has started to calm down after 2 days or so, whereas before it would have gone on for a week or more.

I am sitting for about an hour of the trip into work now, which is a first since 11 months ago, but still standing for most of the day while there.
Walking for 15 minutes or more still seems to bring on what I can only describe as the 'wet gooey' sensation in my perineum, which I associate with the nerve aggravating from friction and inflaming. This is really the symptom that kick-started my PN pain and I believe illustrates my nerve problem area. It has not really improved noticeably, so hopefully it goes away in time.

Anyway, early days yet, so I can't get too picky!