New Person with Pudendal Nerve Disorder

[MNMom]

I would suggest a Potter MRI, to see where exactly your entrapments are. Then, you can narrow down which surgeon is able to help you (i.e. proximal or distal Alcock's?...etc)

cari

The doctor who is treating me right now (Dr. Antolak) states that there is not an MRI technique that will definitively show where the nerve is entrapped. Is he misinformed?

J. Koenig

Konedog,
I wonder about Antolak as well. I'm sure he has heard of the Potter MRI but is hesitant to embrace it? Maybe because it would minimize the number of patients choosing the TG surgery? I can't be sure, but I don't think he seems open to newer approaches.

[GregT]

Quote from Violet:

I disagree with our previous poster about the ligaments not being important. I was just on the phone this afternoon with a gentleman who had surgery in Houston a few years back and now has severe pelvic instability problems after having the sacrotuberous ligament cut and is in pretty bad shape.

Violet,

Can you describe what this man is experiencing in detail when you say that he has "severe pelvic instability problems". I've really heard anyone actually describe in detail "pelvic instability". I've only seen others warn that by cutting the ligaments leaves patients with a "high chance" of them developing pelvic instability. Now, I know that is a lie, the "high chance" statement. But, again, what exactly is this man experiencing, if he actually gave you details about his problem.

Thanks.

Greg

[Violet M]

Jim, I'm very pleased to hear you are doing so well. I believe all healing is a miracle -- some fast and some slow, but the faster the better!

You are right in that we, the patients, need more hard data. I wonder if the surgeons who perform these surgeries are publishing their long-term results? If so, where can we access this information?

Most of the publications on surgery results can be found on the publications page of the website. http://pudendalhope.org/node/25 I think the longest study came from the Nantes team but it's a small population of patients. http://pudendalhope.org/sites/default/f ... sition.pdf

Violet,
Did you happen to have pain beneath your hip bone as well (where the OI attaches) ? When my perineum flares up so does that area. I have a lot of pain there that can radiate down the front of my legs. I haven't seen anyone post about this symptom so far.

No, I don't recall that symptom but as is often the case with people with PN, you probably have more than one thing going on. That fact that no two of us are exactly alike is what makes it so difficult for physicians to diagnose and treat us sometimes.

I wish that somehow I was able to find out about this disorder more quickly. I can't tell you how many times I googled "Pain while sitting" and "Sitting Pain" and this never came up in the search results.

Thanks for that info. Maybe we need to figure out how to optimize this website so that it will show up in google for "sitting pain".

Violet,

Can you describe what this man is experiencing in detail when you say that he has "severe pelvic instability problems". I've really heard anyone actually describe in detail "pelvic instability". I've only seen others warn that by cutting the ligaments leaves patients with a "high chance" of them developing pelvic instability. Now, I know that is a lie, the "high chance" statement. But, again, what exactly is this man experiencing, if he actually gave you details about his problem.

That's a good question, Greg. I did not ask him what his specific symptoms were but I've heard it described as pain in the sacral and SI joint areas. I had pelvic instability before surgery and the symptoms were pain over the sacral area due to chronic ligament strain and also when the physical therapist did my examination she literally gasped because my hip fell off the side of the exam table when she placed me on the edge of the table. I guess that does not happen with a normal person. I had one leg shorter than the other, and when a chiropractor did an adjustment to get my pelvis in alignment the adjustment would not hold for more than 5 minutes. When there is a pelvic misalignment muscles go into spasm to try to compensate and there may be nerve impingements as well, which is what happened in my case. So the main symptom would be pain I expect -- at least it was for me.

I agree with you that there may not be a "high chance" of developing pelvic instability when the ST and SS ligaments are cut. We really don't know because there haven't been any publications on that subject; only anecdotal reports back from patients. And like konedog said, the physicians seem to be in disagreement on the subject. I remember a survey taken on your website a few years back where approximately half of the respondents (out of about 20?) reported problems after having their ligaments cut. But we can't really draw any conclusions from that since it was not what you would call a scientific study. I am just uncomfortable with blanket statements arguing one way or the other because we just don't know. I would love to see some of the docs publish on this subject -- on real people, not on cadavers.

Violet

[GregT]

Violet's words in quotes:

I agree with you that there may not be a "high chance" of developing pelvic instability when the ST and SS ligaments are cut. We really don't know because there haven't been any publications on that subject; only anecdotal reports back from patients. And like konedog said, the physicians seem to be in disagreement on the subject. I remember a survey taken on your website a few years back where approximately half of the respondents (out of about 20?) reported problems after having their ligaments cut.

Violet, I do remember the % being much higher than what I'd experienced from talking or corresponding to so many people over the years. I also do know that no one who was cured and had no problems participated in the survey (except for maybe Celeste) because they either were no longer on any forum or else they never even were on a forum. Our population was, I would say, a skewed one.

But we can't really draw any conclusions from that since it was not what you would call a scientific study. I am just uncomfortable with blanket statements arguing one way or the other because we just don't know.

I am equally as uncomfortable with people making blanket statements like this. You won't find me ever saying "no one experiences any problems from having the traditional TG surgery. I've only questioned those who, in my opinion, have greatly exaggerated this percentage, seemingly hell-bent on swaying other forum members their way. In the scheme of things, these people have been newbies compared to someone like myself, and they've been in no position to talk in such grand terms about the issue of cutting the ligaments. They hear from 2 or 3 people who are really angry because they've been made worse (while possibly their pudendal pain is gone..........think Richard from pudendal.info) and, before you know it, they're spouting off wild and erroneous accusations against the traditional TG surgery.

The main reason why I bother to engage in this argument about the ligament cutting is that from all that I know (and I know a lot), the traditional TG surgery has yielded the most cures. I say this not because I have data of one surgery versus another, but merely based on the hundreds of people I've known over the years who've had different surgeries and who has been cured with what surgery. I will grant that during my most prominent years of being on the forums the most that the most commonly used surgery has been the traditional TG surgery. However, I have to admit, after not being on "hope" for a good while, I did have the feeling that there would be a more positive feeling about the surgery in general. When I read MNmom's comment about how reading the site made her feel "hopeless", I was surprised. I figured that with all of the members this site has and with all of the doctors (many newer ones) that you are all involved with that the outcomes would have yielded more optimism. I don't say these words with any joy or a smile on my face. Like you, I only want for people to get better, and I just do my best with what knowledge I have to advise people as best as I can.

Greg

I would love to see some of the docs publish on this subject -- on real people, not on cadavers.

Violet

[MNMom]

Greg/Violet,
To clarify what I meant when I said it seemed sort of hopeless -
It seems like there has been a lot of progress in this field in terms of visibility, new surgical techcniques, and the number of people in the medical field here in the United States who are specializing in this area. It's great news that we can reach out to so many for help now.
The overall prognosis, however, still seems to be discouraging. There are very few success stories. The forums are full of people with failed surgeries still holding onto hope or desparate people like me overwhelmed and wondering what to do.
-MNMom

[janetm2]

Greg and Violet,
Thanks for your postings on this topic. I am trying to guide someone through this ailment and wondered what to say about the ligament cutting and you have pulled together and I can point her to this thread.
Janet

[Violet M]

I will grant that during my most prominent years of being on the forums the most that the most commonly used surgery has been the traditional TG surgery. However, I have to admit, after not being on "hope" for a good while, I did have the feeling that there would be a more positive feeling about the surgery in general. When I read MNmom's comment about how reading the site made her feel "hopeless", I was surprised. I figured that with all of the members this site has and with all of the doctors (many newer ones) that you are all involved with that the outcomes would have yielded more optimism. I don't say these words with any joy or a smile on my face. Like you, I only want for people to get better, and I just do my best with what knowledge I have to advise people as best as I can.

Greg

That's very true, Greg, that the TG approach has been used far more than any others for PNE surgery so you would expect it to have the most cures. It seems a lot of the veteran success stories such as Chloe, Wendy, and RJR have moved on with their lives and we have a lot of newbies posting right now. Also, many people are opting for more conservative therapies first before heading into surgery. I agree with you that it's unfortunate that we aren't hearing more success stories than we are lately.

Violet

[Celeste]

Also, many people are opting for more conservative therapies first before heading into surgery.

But, people have ALWAYS done conservative therapies first. I don't see how it's even possible to first head in to surgery when these doctors require you to exhaust your conservative options first. The whole decision to even have the surgery is always made because nothing else worked, and let's face it, nobody who comes here is eager to have surgery at all--in fact the idea is kind of frightening, and they would MUCH rather take a pill or hope that enough PT is going to fix it. But when those don't work, then surgery does start to feel like something worth trying. As you pointed out, people DO get well from surgery, even if they (we!) are not well-represented in the daily traffic on the forums.

I think the main difference now as opposed to several years ago is that there are more providers and variations on testing and treatment to choose from, and all of it contradicts the others. So the patient tries to get the "most" diagnosis for the least unpleasant testing, and then tries to have the "least" invasive surgery, even having several surgeries by different doctors. We used to have the few doctors say to give surgery a year or more to see full results, and now we have doctors saying that if you don't have results in days or a few months, then it was a failure. I think that what patients go through emotionally now is harder than it ever was, especially when you throw in how much more difficult the insurance situation has gotten. Sometimes I question how much progress we've actually made, but then I realize that one blessing here is that people seem to be seeking help after much shorter onsets of pain thanks to the search engine and the forums. It's much better to find help several months in rather than after several years of life-altering pain, if only to get on pain management that much sooner while options are tried.

[konedog4]

I am vaguely familiar with the Hollis Potter MRI, but I need for detail. Several questions come to mind:

1. What does the Potter MRI do differently than a traditional MRI to visualize the PN's?
2. Can a Potter MRI show specifically where the PN may be entrapped?
3. If the entrapment site is known, will this change one's surgical approach?
4. HOw does one arrange for a Potter MRI? Is a referral needed by primary MD? And how about insurance? If insurance is not covering it, what is the cost?

Dr. Antolak, my current doctor, stated definitively that an MRI does not show PN entrapment, and this is why he has not ordered it for my case. Is he wrong, misinformed???

Jim Koenig

[carolynm]

Hollis G. Potter, MD Chief, Magnetic Resonance Imaging Hospital for Special Surgery Professor of Radiology Weill Medical College of Cornell University

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th Street, New York NY 10021
Basement level

Appointment Desk
Tel 212-774-7296
Fax 212-774-7295

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

To be reviewed by Dr. Hollis Potter:

Please have it faxed to 212-774-7295 by your doctor.
and then call MRI department at 212-774-7296 to schedule an appointment.