Dr Dellon

[A's Mommy]

Dear Flyer28


I echo the concerns of many forum members that there is an underlying enigma of SYMPATHETICALLY MAINTAINED PAIN.

I applaud the work of the French in Nantes who are giving patients Ketamine. I applaud the work of Dr. Hibner and his time for giving TG patients Ketamine.

I am thinking that we will be seeing much more about this old drug in the near future. I for one will be going for infusions as soon as they are approved by my insurance.


You speak very good English. What are you next steps now that Aszmann said you are not a surgery candidate?

Warm regards,

A's Mommy

[flyer28]

Dear A´s mommy
I am still waiting for the email from Aszmann with two issues:
1) His evaluation of my 3T MRI
2) date for 17Mhz ultrasound of prof. Bodner (Aszmann promised to arrange that date).

After that I will decide what s going on. Probably will start extensive physical therapy focused on eradication of trigger points.
And before the summer, I will probably undergo hypogastric plexus block at prof. Urban in Prague. Risks seem to be limited.

I wrote about my case many times, dont wanna bother you with details. But the fact that I had these pains 4-5 times in 2009 with COMPLETE resoultion before it got constant is giving me small hope, that my case is not true entrapment, but some severe case of CPPS, based on the muscles dysfunction, smooth cavernous nerves spasms etc.

This is enormously exhausting battle.

My english is far from perfect, but surely better than some 28 years ago, when I learnt first few words, I remember that day in the school till now
Sometimes considered english to be too rationalistic and pragmatic language, but then I read short stories from Ray Bradbury and now I deem english to be one of the most poetic languages worldwide:-)

How s your condition developing?
Are there any signs of improvement?

Matt

[JODDY]

Ali, I was thinking about seeing DR.Aszmann,but since you said your surgery was a failure, I think I will hold off seeing any PNE doctor. I have Levator Spasms and sometimes it bothers me a lot and other times it will ease off a little. I couldn't imagine this problem being any worse than it is.
I may see a pain management doctor and see if that will help me.I

[flyer28]

Maybe it is still too early from those Dorsal decompression surgeries performed by dr. Dellon and dr. Aszmann, and maybe the nerve will regenerate later. difficult to say. what is a big enigma for me is, that almost in all cases the findings DURING the operations are justifying the intervention: the most of the nerves ARE compressed by fibrotic tissues, etc. Pain after operation might be the consequence of DIFFERENT reasons than pain before operation (healing, central senzitization etc.). I know that for those suffering is this hardly and explanation.
But several cases are very similar. I would be very curious what dr. Dellon and dr. Aszmann think about this.

[Pelvis Stressly]

almost in all cases the findings DURING the operations are justifying the intervention: the most of the nerves ARE compressed by fibrotic tissues, etc.

Gotta reiterate here, just b/c scar tissue tissue is present around a nerve, that doesn't automatically imply it's the problem. Pretty sure this is what happened w. me & my experience w. Dellon...yes, he did find scar tissue around the nerve, but I'm not convinced it actually had anything to do w. my symptoms. This is partially based on the fact that my symptoms are worse now (approx. 5 weeks post-op), but more so the nature of said symptoms: the surgery has made things worse in a way specific enough to show me that it really is chronic muscle tension I've been dealing w. all along (the ischiocavernosal muscle is clearly weaker/more compromised now...hoping it's still just in a healing stage, testicles are now constantly tight...which isn't even mediated by the pudendal/dorsal nerve, symptoms only really improve w. the application of heat, etc.).

Again, as Glenn (the RMT who administers the Shockwave therapy in Cornwall) put it, 'any adult is going to have scar tissue in pretty much any muscle in their body. That doesn't mean it's necessarily a problem, and I won't treat it unless it matches up w. the presenting symptoms.' And the tricky part there is, as we know, there are a lot of conditions that can produce PNE-like symptoms. So you present w. those symptoms & add in the presence of a bit of scar tissue, and it makes a pretty convincing, yet potentially very inaccurate case for nerve entrapment (which is precisely what I think happened in my case, unfortunately).

[Lernica]

Hugs, PelvisStressly. It's still early days. Your body is healing from surgical trauma, and this takes time.

[Faith]

Again, as Glenn (the RMT who administers the Shockwave therapy in Cornwall) put it, 'any adult is going to have scar tissue in pretty much any muscle in their body. That doesn't mean it's necessarily a problem, and I won't treat it unless it matches up w. the presenting symptoms.' And the tricky part there is, as we know, there are a lot of conditions that can produce PNE-like symptoms. So you present w. those symptoms & add in the presence of a bit of scar tissue, and it makes a pretty convincing, yet potentially very inaccurate case for nerve entrapment (which is precisely what I think happened in my case, unfortunately).

This is something I have been wondering about a lot. Thanks for sharing Glenn's thoughts. I am so sorry you are not seeing more improvement PS. I agree with Lernica it is still very early. I know you've talked a lot about muscle tension and think that may be the real cause of your pain, but do you think central sensitization could be playing a role as well?

[Pelvis Stressly]

think that may be the real cause of your pain, but do you think central sensitization could be playing a role as well?

Not so much, only b/c pain has never really been the issue for me (although I did & still do get some pain in the area). For me, it's always been about lack of blood flow to the area & the accompanying dysfunction. After ruling out any obvious vascular problems, I concluded it had to be either tight pelvic floor muscles constricting an otherwise normal blood flow, or a compromised nerve causing the Buck's (penile) fascia to constrict (leading to the same outcome...ie. preventing an otherwise healthy blood flow from properly dispersing).

I thought I had thoroughly investigated the tight muscle scenario, so finally opted for the surgery in an attempt to address the 2nd (nerve) theory. And I'd like to say I agree w. you guys that it may just be too early post-op to see results, but as I mentioned in my last post, the nature of the symptoms I'm getting now is making it pretty clear to me that it is actually a muscle thing (more obvious now how weak & constantly 'clamped' the muscles in question are). I think maybe I just didn't manage to target & relax said muscles as successfully & consistently as I thought I had back when I was doing all that physio, relaxation, etc. My plan now is to wait a few months & let the surgery 'settle', & once things are (hopefully!) back to baseline, start again w. a comprehensive program of relaxation (I know better now what I'm doing in that dep't. + there are some other tricks I've come across since, that I want to add into the mix).

Regardless, thanks to both of you for the encouraging words.

[Skylar]

Hi PS,

So sorry to hear that you aren't yet seeing good results from the surgery. If only there was a way to know for sure what the best approach is for each of us with this perplexing condition. I admire your determination and positive outlook despite your current disappointment. That in itself is inspiring.

I'm hoping that not only you, but the many others undergoing treatments see improvements in the near future.
Cheers, FG

[Pelvis Stressly]

Thanks for the warm words FG

Don't always feel as positive as maybe I come across here, but really there's no other option than to just keep forging ahead for a fix. I think it is maybe partly determination, but prob. more just out of necessity (status quo's so shitty that I feel I have to keep looking for a solution, if only to keep some hope alive!).

Anyway, glad you're able to derive some inspiration from my posts. I know I'd definitely feel more alone w. all of this if I didn't have this board & a lot of the people on it weighing in w. their own inspirational stories & words of encouragement.

And definitely agreed re. your sentiment of hopefully everybody here seeing some improvements in the near future!
Take care, PS.