ezer wrote:Please consider also that they have to cut through some small muscles like the ischiocavernosus to get through to the dorsal nerve. It is delicate and it is not risk free.
ezer wrote:I am more concerned about what they had to cut to get to the dorsal nerve.
Couldn't agree w. these 2 statements more. I'm much worse off since my surgery w. Dellon & it's b/c of the fact that he transected the IC muscle in order to gain access to the nerve. That's resulted in a substantial loss of stability in my penis...totally caves in over to the left side now (+ there's a constant clamped sensation in that same muscle, which is preventing blood from dispersing on that side...penis has totally shrivelled up when flaccid as a result, & things aren't much better when I'm stimulated).
Pelvis Stressly,
Thank you for the info. Sorry to hear about the problems you are experiencing. Did Dr Dellon perform any specific examinations or sensory tests prior to surgery that, in his mind, would give him an indication that there was a problem with your dorsal nerve?
BTW, I happen to know that Dr. David Ralph in London is one of the worlds foremost experts on surgery to correct penile instability. He might be able to help you. You can google him.
Dr. Dellon examines your bank account to make sure the check for the surgery clears.
P.S. Sorry to hear about your suffering. Thanks for sharing your story to save someone else from cleaning out their bank account for this guy. You did what you thought was your best move at the time. Their are no clear choices with this condition but I think the verdict is in on Dr. Dellon.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
I am prone to agree with pelvis_stressly and ezer.
Here are my short comments regarding my case:
1. Pain – actually I also dont experience severe pain, which is described by many veterans of PNE here. I never had any shooting pain, my pain was always more aching, pulling, persistent....Kind of pain you can distract of, but at the end of the day you reckognized that it is still there, day after day.... I am not bedridden, I am fully mobile, last summer I even played tennis. I dont have any sitting pain issues. But certain amount of pain is still there, always, often it is more an ache than pain. What always magnifies the pain in relatively huge scale, is the stress. I am having some minor anxiety attacks, sleepless nights with all that analysing, job-related stress, tensious communication with my girlfriend....this magnifies my pain hugely. Speaking purely physiologicaly, I think that maybe my pain is not transmitted by dorsal nerve at all, because ultrasound guided dorsal nerve block was completely useless. No relief at all. It was placed in immediate vicinity of dorsal nerve, made by prof. Bodner and Aszmann in Vienna with high resolution ultrasound (even I was able to see the shadow of the dorsal nerve)...And nothing. They palpated the nerve all along its course and I had no Tinel sign. I felt only the pressure from finger, but no more additional pain. I dont have any pain in the glans and frenulum, which are the most sensitive parts of penis. No numbness, no ED issues.Only feeling of having two guitar strings instead of ischio muscles and feeling of having „taped“ penis somewhere inside. stories from hardflaccid.com are more similar to my case than stories from here. I had this condition 5-6 times in 2009/10 (with complete recovery with no pain) before my pain/ache became chronic.
2. dr. Aszmann vs. Dr. Dellon – both are arguably top neurosurgeons worldwide. But they are surgeons, which means they are lacking the immediate and profound experience with longterm suffering patients with CPPS, variouos prostatitis-like cases, pelvic myoneuropatia, hardflaccid cases etc. I felt that some PT (hopefully mine too) are better equipped for this long fight. My PT told me that various myoneuropathic issues are Milion times more probable reason than a signle entrapment point somewhere in urogenital diaphragm....On the other hand, I believe that Aszmann results are much better than Dellons. He is surely a „go to guy“, I had only the best impressions from visits at him....I am curious what results his study will reveal.
3. Botox remains an option. Not without risks, but if this option has been mentioned by my PT who is aged 50something and is an experienced PT, having worked many years in Germany and publishing predominantly about pelvis, this might be an option. Despite some horror stories here, I believe that botox is far less dangerous modality than the operation.
4. My current approach is: low dose Amytriptilin+Phlogenzym+alphablockers+PT+ maybe mental counselling.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
donstore wrote:Dr. Dellon examines your bank account to make sure the check for the surgery clears.
P.S. Sorry to hear about your suffering. Thanks for sharing your story to save someone else from cleaning out their bank account for this guy. You did what you thought was your best move at the time. Their are no clear choices with this condition but I think the verdict is in on Dr. Dellon.
Yes you can easily see through Dellon. I went there for a consult, $750. Recommended surgery, $30k. Then he called me back two months later, forgertting I had ever been there. Was just trying to drum up business by going through some old emails. We are desperate and there are those that will prey on that desperation.
gorenje wrote:Did Dr Dellon perform any specific examinations or sensory tests prior to surgery that, in his mind, would give him an indication that there was a problem with your dorsal nerve?
He just tested the area (externally) with his fingers & when I winced at the spot where the dorsal branch runs (coupled with my cycling history), he concluded it had to be a nerve issue. In retrospect, I should have at least insisted on his PSSD test also (although not sure how much more accurate that would have been anyway!). Thanks for the tip re. Dr. Ralph...will look into him.
donstore wrote:Dr. Dellon examines your bank account to make sure the check for the surgery clears.
Don't think it's so cut & dry actually (no pun intended!). I obviously regret my surgery w. Dr. Dellon, but I also didn't find he was the complete money-hungry fiend people are portraying him as in here. Yes, his surgeries are expensive, but I also got the impression that he does genuinely want to help people. He's been in touch w. me consistently since the surgery (which he obviously didn't have to do), has been good w. quickly responding to all questions I've had for him (even if he doesn't always know the answers), and is clearly upset that his procedure made things worse for me. It obviously doesn't change my situation, but I think it's still worth mentioning.
Pelvis_stressly, what was Dellon s justification why the surgery did not work?
Did he admit that his diagnosis was premature and wrong? that would be at least honest...
Is there any chance for re-do operations?
is there known any at least partial explanation or statement from dr. Dellon (or dr.Aszmann) why some cases go wrong? e.g. new fibrotic tissues, central sensitisation of the nerve...I still think that there must be some explanation, maybe easier than we think.
many cases are very similar: operation confirmed entrapment, relativily quick recovery and then after 2-3 months a relaps...
The other PNE operations (e.g. TG) have completely different pattern: like painful and ups and downs reconvalesces, slow recovery, but at least heading to one direction...
There is something enigmatic with dorsal nerve decompression operations. What makes me scary is the fact that in some articles (Sedy, Aszmann) there is statment that primary symptom of dorsal entrapment is not pain, but numbness and sensitivity abnormalities.
Many authors stated that significant portion of penile pain is transmitted with cavernous nerves bound to prostate.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
yes the reffered pain is very well known phenomenon in pelvic pain department, my PT said that the critical point is almost never at the point where the pain is felt...
on the other hand, my symptoms are fully conclusive with dorsal nerve entrapment, especially when its flaring-up...
I have to try that PSSD test and try to grab some more general pictures about results of dorsal nerve decompression
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly