Here are the responses…
He never mentioned a treatment plan at the end, what are the next steps for your friend?
***Hey man was your friend able to get any further direction from the doctor? ***
He does not know what is causing my patches of inflammation. He says it can be due some local autoimmune situation, an indwelling low grade infection, autonomic dysfunction or he does not know. Treatment would be experimental and address these different possibilities, such as medication to increase sympathetic activity. Even if I did not respond to the injections, a surgery to loosen up the muscle to relax the pelvic floor may still work, but it would be experimental and not a guaranteed cure.
I am currently taking a break from this partly due to cost.
Can you summarize?
I am summarizing from my understanding of what he told me when we looked at the images together. The scans show significant bilateral pudendal nerve inflammation consistent with pudendal nerve entrapment. They also show significant inflammation with a small pocket of fluid next to the “impar ganglion”. They also show vein dilatation at one location around/along the pudendal nerve. There is a significant clinical abnormality. Oh, the scan also showed that my tailbone had turned slightly outwards, which he suspects is due to chronic pelvic floor spasm.
Since there is bilateral pudendal nerve inflammation he does not think that the problem stems from there but that this is secondary due to a problem higher up. Most of my symptoms can be attributed to autonomic dysfunction (the autonomic nervous system does not respond, sexually and emotionally) due to a problem with the impar ganglion, which is responsible for the flight or fight function. He suspects the urethral numbness is due to autonomic dysfunction since the urethra is dominated by autonomic fibers.
If there is significant pudendal nerve inflammation, then I would think that reducing inflammation would get results. Do you know if the fact that the injection didn’t work implies that it is “too late” to intervene and that nerve has suffered damage (I.e., condition can’t be reversed)?
See answer above. Reducing nerve inflammation is easier said than done.
No, he did not see evidence of any permanent irreversible nerve damage. I asked this and he does not seem to think this is the issue. This is after 8 years with symptoms.
Just trying to understand what the implications are on treatability and treatment
See above.
I have read some people do well on corticosteroids or hydrocortisone, do you think yout findings support this approach? For me getting some bloody personality back would be amazing right about now
I don’t know. One of the injections I had was some steriod but nothing happened.
Thats some really good info right here. I have a feeling some of us could mimic these results if given the same tests.
Yes, I had a few problem areas (see above) so the only way to get somewhere with this is if more people have an MRN (preferably with Filler, he is the best in this area of the body and he is METICULOUS) to see how/if our images show consistencies. Moreover, he is a lawyer as well and uses his imaging in legal cases. He is a very busy person and if enough people show up with identical symptoms and identical scans, maybe this issue will get his full attention. Right now, I am only one of many of his patients with various horrible life wrecking symptoms. It takes his average patient 8 years to find him. He is the last stop!
I wonder if IVIG would be an option if theres any immune involvement or qualify for insurance in this case?
I would love to try! It certainly addresses both the infection and autoimmune possibilities.