Standing makes things worse?

[stephanies]

Let's see . . .

1. Before my Filler MRN, I saw Dr. Bautrant in France. He did not think my nerve was entrapped based on EMG testing. I then did the MRN, which was read by Dr. Filler. I consulted with him in CA and decided to go ahead with surgery. He makes an individual decision on whether to cut the ligaments or not during surgery. I had bilateral surgery with him and he did not see any reason to cut the ligaments, just sectioned out a portion of the ss ligament, left TG alone. 6 months later with no improvement, I saw Dr. Campbell at Hopkins (I had consulted wity him several times before my Filler surgery though) about the pain and he felt my nerve was entrapped in the ligaments and not fully decompressed by my previous surgery. He did a surgery (left only, I decided to only do the worst side) to completely sever the ss ligament and window out most of the the st ligament left intact by Dr. Filler in an attempt to completly free the nerve from the ligaments. The Campbell surgery was poorly thought out on my part and I was rushed into a decision because he was weeks away from retirement. In hindsight, I would have done many things differently in my PN treatment.

2. I did PT preop for about 18 months and post-op (beginning about 6 months after the Campbell surgery) for about 6 months. It increased my pain both preop and post-op. Most of the work was done internally and the cause of my pain was not. I also did dry needling, Botox, accupuncture, microcurrent therapy, and many more. Everything either did nothing or made me worse, especially the microcurrent therapy done post-op.

3. I never felt like I "knew " I was entrapped and that my pain was being generated by an entrapment rather than something else. Br. Bautrant thought I had injured my PN when I fell and it would take 3-5 years to heal, but he did not recommend surgery. Maybe there was something to what he said since my improvement came about 3 1/2 years after the initial onset of symptoms.

I think this answers all your questions. I hope you and your family were able to have a pleasant Sunday and a Happy Easter.

Sincerely,
Stephanies

[Violet M]

Interesting, Stephanie. I don't recall seeing the autopsy studies you are referring to so I can't say for sure and I'm not finding any publications in pubmed on the subject but I might be putting in the wrong key words. I'm not sure how you would tell on a cadaver if there is a nerve entrapment. At least on the cadaver I saw, the tissues are more shriveled up than they are on a live person who is cut open during surgery.

Dominick, my understanding is that the nerve can be encased in the fascia. I don't think you would find the main trunk of the pudendal nerve deep in the muscle because it runs between the obturator internus muscle and the muscles of the levator ani in the Alcock's canal. At least I've never heard of it being deep in the muscle but I could be wrong. However, the terminal ends of the nerve or the nerve branches may run deeper through the muscles such as the bulbocavernosus.

There has been a lot of discussion about whether a physicial therapist can release the nerve from scar tissue or fascia. I'm not sure there is consensus on the answer but I think typically the PT's would say they can. Some patients may disagree based on their personal experience. Some people on the forum have mentioned success with ART physical therapy. http://www.activerelease.com/what_patients.asp Some of the PT's use soft tissue mobilization. It might depend on the amount of scar tissue or how badly encased the nerve is as to whether it could be released.

Just because the sciatic nerve doesn't pierce the piriformis muscle, doesn't mean you can't get sciatic-type symptoms from a piriformis muscle that is in spasm.

I did get your PM's. If they are in your outbox, it means I haven't opened them yet. Once I open your PM, it should go into your sent box.

Take care,

Violet

[stephanies]

Hmm . . . I thought I remembered reading about the PN on cadavers long ago, maybe on an old forum? Since it may not be accurate, I edited my previous post to remove the information so I do not mislead anyone. Do you know if PN doctors believe that we are born with an entrapment and then after some type of strain or trauma the entrapment become painful, or does the entrapment itself occur as a result of the trauma?

[Violet M]

Hmm . . . I thought I remembered reading about the PN on cadavers long ago, maybe on an old forum? Since it may not be accurate, I edited my previous post to remove the information so I do not mislead anyone. Do you know if PN doctors believe that we are born with an entrapment and then after some type of strain or trauma the entrapment become painful, or does the entrapment itself occur as a result of the trauma?

It may have been on the old forum. I don't remember it but there are lots of things I don't remember.

I don't know what most of the PN docs think, but I do know that Dr. Bautrant feels there is a genetic component because he has seen PN run in families. I agree with him because it runs in my family. I feel that there is a musculoskeletal component and if certain triggers are in place then you are more likely to get PNE. For instance, even though I have a musculoskeletal/genetic predisposition to develop PNE, I might not have developed it if I had never lifted weights. There are many people who lift weights and don't develop PNE but maybe that's because they don't have a musculoskeletal or genetic predisposition to develop it. This is just my theory and could be completely wrong.

Violet

[Gary]

I am

[blightcp]

I am sure I remember reading that one of the PN doctors (maybe it was Robert?) noticed that cadavers sometimes appear to have an entrapped pudendal nerve, yet these individuals expressed no pudendal issues prior to death.

It seems to me that it is the luck of the draw and that the nerve routing and trunking in humans (maybe animals can get PN or PNE!) isn't perhaps of optimum design from an engineering systems point of view. Nerves do seem somewhat vulnerable from attack from our own ligaments and muscles! God perhaps should have wrapped some tough conduit around them!

I think we call that a spine

Bur seriously, I have done some research looking at the medical papers and the trunking of the PN. And it varries a LOT. Also the vascular bundle varies and can get tangled up in the nerve.

But all of the male serious cyclists I know (5) have had had some issue of one type or another with PN. Most know what PN is, and are too afraid to get treatment and be told they can't ride anymore. But those that know me, now better understand how dangerous not treating the issue is. When I was returning to work from surgery I got allot of timid but honest questions.

Also would put that "saddle sore" is in some cases the PN pissed off.

It all comes down to your genes and how your body was assembled, then whether or not your activity causes injury.

[Gary]

In my new bout of pne, PNE MARK 2...

I have pain sitting, standing, laying down, and walking...

[janetm2]

Gary,
Oh my so sorry to hear. Is there a pool nearby you can maybe float and get some relief?
Janet

[Positivepoppy]

I get huge relief from using a pool, difficult to get out but to be pain free a few times a,week is heaven. Really sorry you are suffering again, are you still on meds?
Take care of yourself