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)?
Just trying to understand what the implications are on treatability and/or therapy options.
Thats some really good info right here. I have a feeling some of us could mimic these results if given the same tests.
I wonder if IVIG would be an option if theres any immune involvement or qualify for insurance in this case?
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
What is the state of forgetfulness and brain fog
I just posted last week about if we should look at the SGB shot. I dont think anyone even read it.
Using Stellate Ganglion Block (SGB) to Treat Post-Traumatic Stress Disorder
Can you summarize?
Who are you replying to?
This is one of the most interesting threads I have seen on propeciahelp in years. Does anyone have an idea what the implied treatment might be? The words “entrapment” and “inflammation”, to me, imply that some kind of physical or anti-inflammatory intervention in pelvis might “cure” some of us. But the post makes no mention of this. Does anyone here have knowledge to make anything of this? Of course the word “neuropathy” has potential implications of neuron death and irreversibility.
Would really love to see more thoughts from people on this.
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.
It sounds like the basic issue is that the pudendal nerve is inflamed and therefore has pressure (as a result of being “swollen”) on it that causes dysfunction or some kind of impingement. Is that a fair understanding of things?
If this is the case, regardless of what caused that inflammation, I am wondering how an injection/total anti-inflammatory in the area could not have an effect.
This is very exciting new information, I just wish I could make better sense of it.
Would it make sense for the patient to try taking anti-biotics to test the idea of it being an infection? Just asking since that is a relatively low cost and non-invasive option to test.
What is the name of the scan? Maybe I can get the same one done
Sounds like his expertise in performing the involved scans is part of what makes this doctor special, though.
I just wanted to say thanks for getting this info out there guys. I’m sure I’m not the only one who’s started taking finasteride, noticed a few side effects and been able to confirm the link to the drug thanks to you.
I only started taking it about two weeks ago (there are 12 tablets left out of a 28 box) the first weekend I noticed issues with recall but, put it down to tiredness. Late last week I experienced lower back pain and significant reduction in libido (I’ve had a boner almost every morning since I started getting them, now I havent had one in days). This morning I woke up and felt like I was stoned(I still do). So when I got my reminder tonight to take another little pink pill, I decided to just to a little delving into what this “risk and side effect free” hair loss treatment was.
Thankyou.
I cant still cant say for sure that there is a link between some/all of my symptoms and the drug but there is more than enough evidence here to make me stop taking it.
Incidentally I read another post on here where a user noticed significant reduction in symptoms after taking ibuprofen for a cold. If I’ve understood this thread correctly, many of our symptoms stem from inflamation. I wonder if anyone else has noticed a relationship between their symtoms and anti-inflammatories?
I don’t even want to click on this thing. I just wanted to say that PTSD is most definitely not a “biological condition”, whatever that is supposed to mean. It is disgusting what people would do for money.
Just curious what makes you say such a thing when biological abnormalities have been discovered in PTSD patients?
The short answer is that what makes me say it is the direction of the causality.
Their response: "Dr. Filler thinks that the bilateral pudendal nerve inflammation is not the root of the problem but a symptom. He thinks the root of the problem is the inflammation behind the tailbone which seems to irritate the impar ganglion, which affects the autonomic nervous system. "
Anybody with more to add to this
I’m just beside myself because of the myriad of things that it could be and NOBODY knows
Why am I experiencing very gradual decrease in sensation pertaining to erections or taking a piss slowly overtime
FUCK!!!
And before ppl jump on me about putting other sides above ED or dick problems, I’ve had those too, I’ve just recovered from them thank God
I’m just beyond fed up with these symptoms
I’d be better taking a few days off the forum, is one scary thread after another these days.