Surgery/treatment dilemma

[PN_down_under]

Ok, so 5 months post-op from dorsal nerve release surgery and it is looking more and more like it has not been successful. Sitting tolerance has been gradually decreasing again over the past 2 months, and general day-to-day groin pain has been increasing, despite increasing my medication dosage. <sigh>

So now I am back in diagnosis/research mode to try and figure out how to get rid of this thing.

I decided to draw a picture to illustrate to you where my pain issues are, rather than just using words. The blue lines are the incisions from the dorsal surgery, while the red area is where I feel most of the nerve pain/symptoms. Particularly at the lower half area of the red, where I feel the foreign object/gooey sensation when walking and where the muscles seem to twitch and spasm i.e the transverse perineal region . So I am now working on the assumption that my perineal nerve branch/s are the problematic nerve branches injured by the bike seat:

pain area illustration_small.jpg (20.13 KiB) Viewed 1710 times

This is further reinforced by where I actually felt pain on my penis; only on the underside centre line of the shaft and worst at the base under my testes. Again the perineal nerve according to this studies findings:

Penile innervation.png (59.01 KiB) Viewed 1710 times

Additionally, the ischiocavernosus and bulbocavernosus muscles are innervated by the perineal branch.I am led to believe these are the muscles located inside my perineum and control penis blood flow and erections and are attached to the ischial tuberosity. These muscles spasm or ‘flinch’ when the pain is increasing and seem to cut-off the blood supply to my penis (assuming this is what causes my ED too). This means my penis always seems to shrivel, feel cold, and have no color, with the lack of blood when I get a nerve flare. This area is where I am most tender to touching or pressure and where I feel the deep aching pain.

So I got in touch with Dr Lee Dellon, and he seemed fairly quick to concur that it is the perineal branch, wanted me to lock in a date for surgery, and left the cryptic line how "would you feel about having that be numb instead of painful?". So after a few emails backwards and forwards trying to get him to explain what he meant by that statement, he seems to be refusing to elaborate and it has eventually resulted in him sending me a rather nasty email about me being his 'inquisitioner' I am not sure why he thinks it is reasonable for me to travel halfway around the world for him to answer a simple question that would take 1 minute and 2 sentences in an email. But anyway, I digress...

I am relying on the smart people here to help me answer this question: What are the implications for removing the perineal nerve branch/s in a male? Other than numbness in the perineum, lower scrotum and underside of the penis, what other symptoms would likely result? Erectile dsyfunction from de-innervation of the ischiocavernosus and bulbocavernosus muscles? Atrophy of those same muscles? Urinary incontinence? Does it totally depend on the branch of the nerve that needs to be removed? i.e. Deep perineal or superficial perineal? etc

Thank you to any that can help me answer these questions!

Regards

PN_down_under

[Pelvis Stressly]

Interesting post PN_down_under (but sorry to hear you're not doing so well).

I've never seen a detailed breakdown like that of which nerve branches innervate which specific areas of the penis. Based on that illustration, I would say my main prob. (assuming it is a neuropathic issue) is actually the perineal nerve also (& not the dorsal branch that I just had decompressed by Dellon 2 months ago)...the pain & tingling I get is mainly on the bottom & side (left only) of my penis.

These muscles spasm or ‘flinch’ when the pain is increasing and seem to cut-off the blood supply to my penis (assuming this is what causes my ED too). This means my penis always seems to shrivel, feel cold, and have no color, with the lack of blood

I get identical symptoms to these (all worse since my surgery). In my case, I'm thinking it may not even be a case of nerve involvement at all (may just be the muscles you mentioned spasming/contracting from chronic tension). Check out this site that flyer28 turned me onto... hardflaccid.org (the symptoms of most of the guys on the forum there match up w. ours exactly).

Does it totally depend on the branch of the nerve that needs to be removed?

Why would they (Dellon?) be considering removing any nerve branches though, as opposed to just decompressing them?

And have you checked in w. Aszmann about it since your surgery? (he seems a little more...ahem...willing to provide detailed replies via e-mail than Dellon!)

[PN_down_under]

Why would they (Dellon?) be considering removing any nerve branches though, as opposed to just decompressing them?

Dr Dellon did not specifically say he would remove the nerve, I assumed that is what he meant due to his cryptic statement of 'would you prefer numbness over pain', but he would not clarify. He has however, since I wrote the above post, said he would attempt a neurolysis of the nerve branches rather than removing them. Removal of a nerve branch would only be required in the case where the nerve has a neuroma somewhere along it's length, which will never allow spontaneous regeneration to occur through it. According to Dr Dellon, loss of the perineal branches would only result in the loss of sensation in the perineum and back of the scrotum...
According to the picture in my above post a male would also loss sensation along the centre bottom of my penis too.

If I knew for sure that the risk was only sensation loss in these restricted areas, I would probably jump at it, because a loss of sensation with no pain would be a much better situation then I am in now. I just thought the perineal branches performed some motor functions as well.

Thanks for the link to that site, I will check it out. Not sure how my problems could be as simple as tight muscles though. It would be brilliant if that is all it is!

[Lernica]

Not sure how my problems could be as simple as tight muscles though. It would be brilliant if that is all it is!

PNdownunder,

I think that many of us chronic pain sufferers, with our over-fired, over-stressed nerves, tend to feel most pelvic pain as burning "nerve" pain. In my experience, though, not all burning pain is nerve pain. I recently had my PN nerve decompressed with shockwave therapy (for more info, type in "Cornwall" in the search box above). However, I am still experiencing significant burning pain in my pelvic floor on the left side which has been tentatively diagnosed as pelvic floor myalgia (tight pelvic floor muscles).

Also, recently I had cortisone injected into my hip as part of a workup for surgical repair of a torn labrum. When the needle went in, it burned like h*ll, and I exclaimed to the surgeon, "Ow, that feels like nerve pain!" He assured me, however, that it was nothing of the sort, since there were no major nerves in that area.

In summary, I think it is very likely that pain with a burning quality is not necessarily nerve pain. It is just our over-sensitized bodies sensing it as such.

[Biker George]

Hi PNdownunder. Sorry to hear of your problems. My cause and symptoms sound very similar to yours. (Too much biking, not heeding the warning signs, and then problems that got way worse even after I stopped biking.) I had surgery with Dr. Dellon at the end of September 2011. I have been on the mend for a while. I have been able to reduce my medications significantly but I am still observing significant activity restrictions. (Only light swimming for exercise, and minimizing sitting as much as possible.) Things are progressing slowly but I am still hoping to have a full recovery. Dr. Dellon's fees are very high but he might be your only option. If he is only going to try a decompression rather than a neurectomy then it would seem that the only downside to you is time and expense. You might want to give it a shot. Feel free to PM me if you like.

BTW, thanks for that detailed diagram of the innervation of the penis. Where did you get that? I was always puzzled why my penis seemed to feel fine on top but very uncomfortable on the bottom. Your diagram would seem to indicate that the problem was with my perineal branch.

[PN_down_under]

BTW, thanks for that detailed diagram of the innervation of the penis. Where did you get that?

http://www.hawaii.edu/hivandaids/Innerv ... _Penis.pdf

[Pelvis Stressly]

Not sure how my problems could be as simple as tight muscles though.

It's a chicken & egg thing though...yes, a compromised nerve can cause muscle spasms. But conversely, a contracted muscle can potentially impinge on a nerve (thus causing nerve pain, w.out the nerve actually being the fundamental issue). And/or a chronically contracted muscle can also be painful in its own right (w.out necessarily any associated nerve pain).

So just b/c you're getting pain down there & you're muscles are tight, I'm not sure that automatically implies you have nerve decompression/damage. Have you had a pelvic floor PT evaluate the state of your muscles yet?

If he is only going to try a decompression rather than a neurectomy then it would seem that the only downside to you is time and expense.

That hasn't been the only downside for me 2 months post-op w. Dellon though. I have all of the exact same compromised blood flow issues as PN_down_under & they've all become substantially worse (at least thus far) since the surgery. Proceed w. caution is my advice.

[PN_down_under]

Have you had a pelvic floor PT evaluate the state of your muscles yet?

Yep, about 1 month after the chronic pain started and as I was in the middle of the initial MAJOR flare. She found all my pelvic floor muscles down the left hand side were very tight with many sensitive points. After two months off work, with complete rest the whole time, she evaluated me again and pretty much said I seemed to be perfectly normal. We thought I was out of the woods at that point...

I am 99% sure mine is a nerve aggravation causes muscle spasm scenario. At the beginning, the pain was always brought on by sitting on a bike seat, in particular, when I subconsciously slid my pelvis towards the nose of the seat putting all that pressure into the perineum, rather than the sit bones. It is pretty clear cut in my opinion.

That hasn't been the only downside for me 2 months post-op w. Dellon though. I have all of the exact same compromised blood flow issues as PN_down_under & they've all become substantially worse (at least thus far) since the surgery. Proceed w. caution is my advice.

I really, really, really don't want to take the chance on another surgery again, but I am getting to the point where I have little choice. I either accept my current situation, which to be honest is intolerable, or I take a punt on something that might work.

[A's Mommy]

pn down under,

i was just informed of this post by a friend.

i suggest you contact prof. aszmann and seek his advice. he is not a man that gives up and i truly believe in him.

i know this is frustrating, but really pray about it and see who you feel more comfortable with. maybe dellon will be the right person for you. i am not saying to discount that. however, i would address your concerns to aszmann specifically in regards to the motor FUNCTION of the perineal branches (which he explained to me, a female, do INDEED serve function as he could not cut them; he only decompressed the neuroma so as i would not lose function.)

my other suggestion is to get a 3Tesla mri at hospital for special surgery in NYC. it is a shame that more institutions do not do her protocol. recently, i looked up dr. potter on google search and it seems as though recently she was down under in new zealend i believe? maybe there are contacts down there. Google her and see.

blessings to you and HAVE FAITH

A's Mommy

[Pelvis Stressly]

At the beginning, the pain was always brought on by sitting on a bike seat, in particular, when I subconsciously slid my pelvis towards the nose of the seat putting all that pressure into the perineum, rather than the sit bones. It is pretty clear cut in my opinion.

I felt the same way about my case pre-op though (I was also an avid cyclist). Anyway, I'll leave it at that...if you do decide to proceed w. Dellon, you should do so feeling good about the decision, so I don't want to be overly negative here. By all means though, PM me if you have any further questions about my experience w. him.

Good luck,
PS.