PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Nerve blocks using many techniques, and medications - options discussed in detail
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Violet M
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Re: PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Post by Violet M »

Sorry you are still not OK. I don't know for sure about your theory on the adhesions but it seems sensible. According to the following website, adhesions would not necessarily show up on an MRI. https://www.med.unc.edu/obgyn/Patient_C ... car-tissue

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
FinalCountdown
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Re: PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Post by FinalCountdown »

Violet M wrote:Sorry you are still not OK. I don't know for sure about your theory on the adhesions but it seems sensible. According to the following website, adhesions would not necessarily show up on an MRI. https://www.med.unc.edu/obgyn/Patient_C ... car-tissue

Violet
Thank you very much, Violet.

FWIW, I met with a young, female pain specialist for the first time last week. I first went to her Pain Management practice (it's quite large - she's an employee) in 2008. She was the first physician in ten years to mention the word, "vascular." Everyone else has said it's either "orthopedic" or "neurological."

In a few weeks, she's giving me a diagnostic/therapeutic block at the Ganglion of Impar - after *ten years* of 2,000 hours-per-year research, I didn't even know this existed. I assume this is to rule out PN, but she also referred me to a vascular surgeon, who will be seeing me soon, and undoubtedly giving me tests, etc. The description of this injection is cringe-inducing.

Does anyone know how much the Ganglion of Impar diagnostic hurts? It will be with lidocaine and a corticosteroid. I just had a Botox injection in the piriformis (which worked very well for the pressure on my sciatic nerve), and the Botox injection was a walk in the park - an expensive piece of cake. But I've also had at least two-dozen other injections, some of which have been excruciating - anyone who says an epidural without twilight anesthesia doesn't hurt has never had one before.

It isn't impossible that this stems from a horseback riding "incident" in 1985, where I went on a five-hour trail ride on an extremely bulky horse, 17-hands high - my legs simply did not abduct this far naturally, and I spent the final three hours of the ride doubled over the horse in agony ("He looks like he's been shot," I remember someone in back of me saying, as my cheek was planted on the horses nape, desperately maneuvering, trying to minimize the torture, for three hours. I was surprised that the pain went away so quickly (ha ha ha - Want to make God laugh? Tell him your plans). Although I only recently made a correlation with the horseback injury, in 1988, I thought sure I had testicular cancer: It felt like I had a second left testicle, and after being reassured by my primary care physician that I was okay, I had a successful varicocelectomy in 1988 (you can Google all of these terms quite easily).

If these two things are correlated, then I have a male version of a very female problem. The government in which I live has clamped down on opioids, and although it didn't seem like I was taking a lot, I was forcibly titrated down, over the past year-or-so, from 240 mg oxycontin + 75 mg oxycodone, to a total of 90 mg oxycodone per day. My current/ex pain management practice (I just switched away from them, and God help them if this new physician turns out to be right) has been Draconian and merciless with my pain management. They amped up my opioid dose, until the state told them they couldn't, and now, all they're worried about is saving their own skin.

Summary: My problem could be pudendal neuralgia or entrapment, and it could be vascular - if it's neither of these two, I'm in imminent danger, because for the first time ever, I'm going to run out of pain medication before my next refill date, and I don't think I'll be able to take it. A friend is going to get me some marijuana, and although I'm not a big drug person, I'm faced with no choice. (I hope I'm allowed to edit this post in the future, but I felt the information was important to help anyone else out there in my predicament - surely I cannot be the only male in the world with this horrible condition).

Thank you to whomever runs this essential forum. Unlike 95% of all medical professionals I've seen (and I've seen many dozens, perhaps hundreds), people here seem like they give a damn.
FinalCountdown
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Re: PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Post by FinalCountdown »

I haven't read this website as much as I should, but is anyone seeing my messages?
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Violet M
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Re: PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Post by Violet M »

Yes, we are seeing your messages. I'm not entirely certain how to respond on the ganglion impar injection. I haven't had one myself so I can't speak from experience and I don't remember anyone on the forum who had them describing them as being excruciating but other than that I can't really give you an educated answer on that.

Any previous surgery in the pelvic area could mean that you have adhesions or scar tissue. I think with pelvic pain sufferers there is often more than one thing that contributes to the development of pain and it sounds like you have several things in your history that could have added up over time to put you into the state you are in now. For me, even though I had a successful PNE surgery it does not mean all of my other musculoskeletal problems have magically disappeared. I still have bad ligaments and SI joint dysfunction so I still have to be careful. The trick is to figure out which treatment is going to bring you the most pain relief so you kind of have to be a Sherlock Holmes and target your worst areas of pain in hopes that other areas will calm down too.

I think that the new laws we are seeing about limiting opioids for true pain patients is close to criminal. Why should doctors have the power to decide whether another human being is going to have to suffer due to opioids being withheld? It is not right. But since it is reality, you have to consider other measures to achieve pain relief. I'm glad you were able to get some relief from Botox.

I'm not sure about the vascular theory. We have discussed that in the past on this forum. Some docs believe varices can be a culprit in causing pelvic pain but others are more skeptical. I don't recall very many people on this forum posting stories of successful relief of pain from embolizations.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
kgb
Posts: 8
Joined: Sat Jan 20, 2018 8:11 pm

Re: PNE vs. Posterior Femoral Cutaneous Nerve Entrapment

Post by kgb »

Hi:
Yes, I can see everyone's post.

Has anyone been able to get relief from their pain yet?

I too suffer primarily from PFCN pain. And hoping for relief for all of us. A miracle would help yoo.

Hugs to all.
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