A's Mommy's MRI with Dr. Potter

[Celeste]

I don't think being closed minded is very helpful.

The simple fact is, most of the PN doctors discount pelvic congestion as a means of causing neuropathic pain. It might be helpful to ask why they would feel that way. They might actually have some really good reasons. I'm not sure, though, that it's completely fair to accuse them of being closed-minded just because they don't agree with you.

[sgrandy]

I think I recall reading on this forum or the tipna forum that the reason why some doctors wouldn't consider pelvic congestion the cause of neuropathic pain is because the vein would not be "hard" enough to compress the nerve even in a state of congestion. I don't know if *all* doctors feel that way though and it doesn't hurt to get a second opinion from another specialist.

[PN-SufferVT]

I fully believe a congested vein or artery could cause the problem. I know they treat folks who have trigemerial neuralgia caused by congested or enlarged artery. There was an NPR story on it last year sometime.

[Celeste]

I fully believe a congested vein or artery could cause the problem. I know they treat folks who have trigemerial neuralgia caused by congested or enlarged artery. There was an NPR story on it last year sometime.

But there's more room in the pelvis for swelling than there is in the skull, where even a small amount of swelling is a problem. But we've also seen people here whose scans said they had enlarged veins, get them embolized, and the pain remains.

It really is possible that a "finding" on a scan is not the answer to a problem. I think that may be at the heart of what a lot of doctors are saying. There have been these stories about people who pay to get some whole-body scan that's supposed to look for deadly problems, and the patients get scared to death by "findings" that are anomalies that will never do a thing to you. I think we want to believe technology is an answer, but in some cases it doesn't deliver on the promise.

[Griff522]

So what are the symptoms of pelvic congestion then?

[kathyd]

Yes Kayrn
About Dr. Conway, when I mentioned my Potter MRI he said he doen't really go by MRI's. (Though he said he respects Dr. Potter's thoughts) he didnt place much emphasis on MRIS but rather the examination itself.
That's fine but he doesnt have to endure the painful long car trip to NH and risk making myself worse! I am trying to avoid that unless it's absolutely neccessary. We are waiting to hear back from an interveniontal radiologist at Hopkins butI fear that it will take awhile. Anyhow it sounds like Dr Conway is discounting any other possibilities. We are not ready to do that yet. I had lots of PT but still think they may have missed something especially when i study the scholarly writings on PN issues and muscular-skeletal stuff. I may get my pt recs from my doc and try to go through them to check their diagnostic comments.
Best regards to you,
Kathy

[A's Mommy]

So what are the symptoms of pelvic congestion then?

Fullness in the pelvis, frequent urination, more pain during periods, irregular periods (I never had these), lower back pain.

[Faith]

A's Mommy,

I know you only had Left sided TG surgery. Are you planning on having Right side as well? Are your symptoms only on the left side? I just can't imagine enduring surgery twice! But I feel like Dr. Hibner is the way to go from my research and my situation and I know he only does one side at a time, right?

[A's Mommy]

Dear Faith,

I started to experience right sided symptoms in early September, before any Botox or surgery or anything. Dr. Hibner truly thought that I didn't have right sided pudendal neuralgia (before my surgery on the left) and I haven't talked to him personally about my right sided symptoms since my surgery, although my husband has and he told Dr. Hibner that the right sided Botox that they did at the time of my left sided decompression did not provide any relief of my neuralgia symptoms. Dr. Hibner was truly disappointed, because he doesn't want me to have to go through a right sided decompression. He said, "I am hoping that as she heals from her left, and her right side stops picking up all the slack, that her neuralgia will disappear." I hope for that too and I am believing God for it. The fact of the matter is, the 3Tesla MRI I had w/ Dr. Potter did show bilateral scar entrapment of the PN in the Alcock's canal, but the left was MUCH greater than the right (Dr. Potter's exact words). Per Dr. Potter, "the decision to do surgery should be based on clinical symptoms and not on MRI findings." So, if my symptoms go away, why do a right sided decompression? It's too soon to tell yet, I'm only 9 weeks out of surgery. I have months of PT ahead of me. If I decline, well, then I'm on the books for a surgery this summer, which can easily be cancelled and I would be HAPPY to never see Dr. Hibner again although he is an awesome doctor, friendly as a big brother, and funny as heck, but I don't want to be his patient anymore, get my jist? LOL I want to be DONE with PNE.

With love (and trying to have a bit of humor today, as it's a hard day)

AM

[Pelvis Stressly]

The conjestion may not be the source of your issues but how could it not be a contributing factor?

As Celeste pointed out, varices aren't generally considered as a potential causal factor for pudendal nerve entrapment/compression.

Potter saw the same distended veins in my scan and also recommended embolization, but I decided against it after consulting with my usual team. Here are the quotes I got on the subject...

"There is no case series about the treatment of varices and pudendal neuropathies." Dr. Beco (PN doc)

"Veins are soft and do not compress nerves. Indeed, varicosities often develop when the nerve is decompresssed." Dr. Antolak (PN doc)

"There is no documentation that I have read that suggest that varices can press on the pudendal nerve." Carolyn Vandyken (pelvic floor PT)

"Pelvic floor varices might result in pain, but the type of pain has usually been described as a dull achy pain." Dr. Jarvi (urologist)

"Veins are generally low pressure and cause symptoms from compression in rare circumstances." Dr. Beecroft (interventional radiologist)

Hope that helps, PS.