Surgery/treatment dilemma

[PN_down_under]

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 do stay in contact with him regularly, but his opinion is fairly steadfast. I am just exploring what other options I may have. I have already had surgery with him, and he seems very dis-inclined to attempt to look at my perineal branches. With good intentions however, as the male pelvis is a lot narrower and he did not want to accidentally make anything worse. He may change his mind however if I do not improve from the dorsal surgery.

my other suggestion is to get a 3Tesla mri at hospital for special surgery in NYC

I have had multiple 3T MRIs here in Sydney, by a radiologist that knows the pelvis well, and all the reports identified my left perineal branches as being enlarged/inflamed. Even I could see when looking at the images myself. The nerves looked like they were glowing compared to the right hand side. So, it seems the pathology is known, but not necessarily the reason for the ongoing aggravation. Muscle tightness? Direct nerve damage? Nerve entrapment in scar tissue? etc

To be honest, I think I would like to explore the ESWT avenue first, before looking at another surgery straight away. But travelling all the way to Canada for something that would require multiple trips is just not an option. So hopefully I can find something similar in Australia. My wife is due to give birth to our first child in around a month, so my options are going to be severely limited for a while.

Thank you for your kind words and advice

[PN_down_under]

12 month update post-dorsal release surgery:

In short 11 months of slight improvement has now evaporated in the space of 4 weeks! Most rapidly in the past week, for no apparant reason. After being off all pain medication for 6 months, I have had to go back onto Lyrica at higher doses than ever just to keep the pain levels (and still climbing) to a place I can just function, and am now REALLY struggling. To make it worse, I now have CONSTANT burning pain bi-laterally, instead of an ache just towards the end of the day on the left, like I have had from the beginning. It is quite clear that the burning pain I now have follows the path of my Dorsal nerves i.e. from the bottom of the incision lines at the bottom of my perineum, and up through the top-side of my penis. But this is DIFFERENT to the pain area I was trying to actually get fixed i.e. aching pain up through the middle of the perineum and the underside of the penis. My original problem is clearly the left perineal nerve, but that is a mute point now, because this surgery seems to have caused other irreperable damage. Every stride now I feel the 'grabbing' sensation on each side of my groin, and I can only assume that the build-up of scar tissue has now hit a critical point in this very narrow area. It now constantly aggravates both exposed nerves, as they are now not covered up in their protective canal on the underside of the pelvis. Both sides started getting worse at seemingly the same time.

Before two weeks ago, I was on zero pain medication, able to comfortably sit for up to an hour, (2+ hours in the car), walk for up to 30 minutes, mild discomfort post-sex, worked full-time using a stand-up workstation, no problems sleeping, and would only get moderatly uncomfortable pain levels if I exceeded these (which would then reset by the following morning). I did not have anything more than mild uncomfortableness for the first few hours of each morning.
Now, I am completely unable to sit, cannot walk for more than 50 metres, have CONSTANT BURNING pain bi-laterally no matter what I do, increasingly weak & painful erections, greatly increased pain after sex, can barely leave the house, and struggle to get to sleep each and every night.

DO NOT GO THROUGH DORSAL NERVE RELEASE SURGERY!!!

I am furious at myself for at least not following my gut, and refusing to allow my right Dorsal to be decompressed, when I had not had a single problem there previously. The line given was "you may as well while your here, cause it won't make it worse, and you want to be sure in case the left-side is not the only problem", and got me to reluctantly accept, despite my head saying 'that does not make sense'. Also being told, 'it will not make you worse' is clearly wrong, given the other members on this forum who have experienced the same as I, just in shorter timeframes. I am furious with the surgeon for not decompressing my perineal nerve, as we discussed pre-surgery, as he decided mid-surgery the dorsal was the only problem.

I can only assume that this is going to continue to degenerate over time, and just feel totally inconsolable with the total loss of hope. After just two years, a healthy & very happy 28 year old with a bright future, has now become a totally debilitated & manically depressed 30 year old with only 40 years of misery to look forward to. I have a beautiful wife and adorable young baby son, but cannot see how I can be a worthy husband or father in this condition. I look with complete envy to all the other young fathers I see. How they can take their kids down to the park to play ball, or go for walks on the beach with their wives. All without a second thought. While I just sit on the couch, doped out on drugs, trying to cope with the pain.

How has this happened!!?? NOONE I have any contact with has ever heard of this condition, including the doctors. How can my happy life be taken away because I sat on a bike seat the wrong way one afternoon?? It is with a certain black irony that I look back on my reasons for starting to cycle to work. That is, to save on travel costs and lose a few kilos for the wife. Instead, it looks like it has taken away the happy future I had with my family, taken away a dedicated husband from my wife, taken away a doting & capable father from my son, and given me a life of misery instead. At least for as long as I can take it in any case.

[nyt]

PN_down_under, my heart ached when I read your post. Probably the majority of us on this forum have struggled with all your feelings at some point in this journey to recovery. I want you to remain hopeful that you will get back to the levels you were at 1 month ago. If you think this is scar tissue have you worked with a pelvic floor PT to see if you can break up some of the scar tissue and work on any tight muscles that are most likely contributing to these problems? You also might want to see if you can find a doctor that does Ketamine. I know several of us on this forum have found it to be extremely helpful to relief pain and relax muscles. Have you thought about trying botox? Keep strong and continue to look for medical professionals who are willing to work with you and help you. It took me 5 years to find a good general pain specialist that was really willing to work with me at the levels I need . They are out there but it does take some tenacity to find them. A big HUG and prayers sent to you from me.

[helenlegs 11]

I am so very sorry that this has happened to you, I can't express how much.
It's very clear that you need some additional help dealing with this. I'm glad that you have expressed the upset you feel so clearly although I am no counsellor, I hope that has helped somewhat.
I was in a situation recently where I really thought I was just a drag on everyone else around me, such a failure. My situation is more because I have (somehow, still not totally sure how) been unable to get any medical help with this, so maybe the opposite end of yours but exactly the same outcome.
Your not to blame,it's this damned nerve nonsense and life $#!*@!!
I'm quite sure your lovely family would not have a similar view and would be shocked to hear you feel this way.
Nothing can take a happy future away when you do whatever you can to be happy with it. No one can stop you being dedicated to anyone, except you. Could anyone ever get in the way of you being a devoted father and give your son the love you undoubtedly have for him? No! just let anyone even try. . .. . and this won't either. OK, you may not be up to scratch right now but it will come.
Sometimes things get thrown at us and it's not fair, not one bit.
I would ask for some pain management treatment and counselling asap as well as pursuing the excellent suggestions from nyt.
Take care,
Helen

[ezer]

PN_down_under,
I am so sorry about your situation. We are in the same boat. The dorsal release has increased the pain from a feeling of burning to a "broken glass" sensation. Not pleasant. PT can help however. It has helped me 4-5 months after the dorsal nerve surgery when I was at my worst. My PT also feels that there is scar tissue forming but her connective tissue work right above the decompressed nerve has helped a lot. It is an awkward angle but I can do some of the work myself.

[PN_down_under]

Thank you for the kind words everyone. I am lucky as i can be in this situation I guess, as my doctor is the only dedicated PN doctor in Australia. But he really does not have too many answers once we get to this point. The PT in the clinic seems to be totally dedicated to just stretching muscles internally, rather than any scar tissue work.

PT can help however. It has helped me 4-5 months after the dorsal nerve surgery when I was at my worst. My PT also feels that there is scar tissue forming but her connective tissue work right above the decompressed nerve has helped a lot. It is an awkward angle but I can do some of the work myself.

Ezer, what does this 'work' involve? Just massaging the area roughly? I can't imagine anything more suited to flaring my nerves up.

[ezer]

Ezer, what does this 'work' involve? Just massaging the area roughly? I can't imagine anything more suited to flaring my nerves up.

She was very careful and did light skin rolling but then went deeper at subsequent sessions. Overall nothing aggressive. She said at first that it felt "crunchy". Certainly not something you want to hear.
Still, I am not back to before surgery and needless to say that I regret doing it.

[Violet M]

PN_down_under,

My heart goes out to you and your family. I am very sorry to hear that you've had a return of your pain and that you are really struggling right now. You definitely still have some options although I'm sure at this point it is daunting to think of starting all over again trying to find the right treatments. Please keep fighting and searching for answers. I truly believe that you will find something that decreases your pain and helps you to return to a fairly normal life. I know it sounds painful but perhaps scar tissue in that area should be easier to reach and deal with than scar tissue deeper in the pelvis. I wonder if cold laser therapy would be helpful.

Violet

[PN_down_under]

I have seen my doctor yesterday. He is quite flabbergasted that my condition has deteriated so rapidly, and says that it is "very strange". Especially because scar tissue would usually pop up as an issue, if it was going to be one, by the 6 month mark when it is in the contraction phase. Looking at the results of my latest MRI however, it is quite clear that there is a lot of scar tissue in the area, so he has suggested some localised cortisone injections. Has anyone had any positive experiences with cortisone breaking up scar tissue?? I am a bit concerned, because this is going to be unguided (how does he know where to put the needle, or how deep to go etc?), and I am already very wary of things being made worse. It also seems like a bit of a 'long shot'...

[ezer]

That is strange. I am not a doctor but I don't see how Cortisone could address scar tissue. In addition, my pain management clinic would not do even a guided block to the dorsal nerve because, I was told, the area is too congested. I seriously think you need more explanations from your doctor regarding the rationale of such procedure.
Dr.Filler was using injections of Wydase (hyaluronic acid) to address scar tissue.