Pudendal neuralgia

[Ralph]

I came across this article and thought it was interesting. I have no personal experience with this doctor. It just peaked my interest.

http://www.jmweissmd.com/pdf/JMW_Pudend ... S_2003.pdf

[webslave]

Weiss and David Wise used to be business partners. There's a thread about it somewhere....

[Ralph]

Very interesting. I'll do a search.

I had a thought. Previously I always concluded that the neuropathy or neuralgia I felt around my perineum and upper thighs was a result of some prostatic inflammation I must of had at one time. I don't think any of my problems are prostate related at all. I think most of our problems are related to myoneuropathy which can be the result of many different types of insults. Here's an article I recently came across even though it was published in 1999. I'm not suggesting people have this done, but offer it purely for education.

http://www.urmc.rochester.edu/smd/Rad/Pudendal.pdf

[webslave]

Oh, that's just another reference to the PNE tribe, largely discredited, IMO, because of the slack diagnostic guidelines, the overlap with much more benign conditions like CPPS, the low success rates for surgery, and the maverick status of the handful of surgeons involved.
viewtopic.php?f=36&t=5767

For instance, family and sports medicine doctor Ken Renney (got his degree in Mexico from the University of Guadalajara), one of the concept's chief protagonists in the USA, published a study in 2007 in which he was only able to claim a 60% success rate for the surgery, and this "success" was not a cure but only a >50% improvement in various woolly parameters.

[Ralph]

That's very good. The success (failure) rates from surgery for PNE are terrible. Most that I've read about take place in Europe. France to be specific. I would never let someone cut into me.

[Ausie]

I know that Pudendal Neuralgia is a grey area, I do believe the nerve is irritated somehow, But I am a firm believer that GOOD physical therapy and natural anti inflammatory supplements will go a long way, the problem is the lack of very good physical therapists. There is also a place for surgery, BUT it is a absolute last resort and the surgeon should be chosen CAREFULLY, as there are no guarantees, and my understanding is a recovery is not a guarantee and a long process. The point here is WE need a lot more good therapists every where not just handful of very good ones. There are too many people suffering out there, and there are a lot of people who have had bad experiences from doctors and physical therapists, and there are people that have had a good result from doctors and therapists, it is a lottery if you do not see the best doctors and the best physical therapists. And at the end of the day the are no guarantees of 100% of recovery on both sides of the fence, sometimes we can only hope for is a better quality of life.

[webslave]

There is also a place for surgery

There is no research to indicate a place for surgery in treating CP/CPPS. Let's be clear about that please.

[Jay]

Hi,

I presume that Ausie refers to pudendal decompression, which ... Despite my past thoughts, I also do not believe there's a place for. There's little in the way of statistics, very few credible studies, and many of the top minds in the medical world don't even know such a thing is done. It's also very possible for the nerve to be irritated or "entrapped" by muscular spasm, which is why assessment by an experienced PT is so important.

That's not to mention the success rate, which seems to be a median of 50% by trustworthy accounts. Full effect can take 1-2 years, which is about the time many chronic prostatitis / chronic pelvic pain syndrome cases burn out anyhow. If you then examine the meaning of success, that is also dubious. Many are left worse or with new problems. Some patients consider "cured" as being down to a fentanyl patch, which is one of the most powerful narcotics on the planet!

If one were that desperate, I would sooner go on a pain management regimen, preferably with a pain management doctor specializing in anesthesiology and chronic pain. It has done great things for me.

Best,

Jay

[Ralph]

Let's think about some other nerve conditions which are treated with surgery. The first that come to my mind is carpal tunnel. I have personally know, as many of probably have, known several carpal tunnel victims who not only didn't improve with the surgery, but in fact got worse. Sure, there are some successes, but the ignorance and lack of science associated with pelvic myoneuropathy is many times greater than that of carpal tunnel yet few people know that the major cause of carpal tunnel is in how we sleep. Believe it or not, carpal tunnel patients sleep with their wrist bent and usually under their chin which turns out to a major cause. A simple wrist brace worn at night can cure the problem, yet hundreds (or thousands) still suffer from failed surgery every year. We need more good investigation into chronic prostatitis / chronic pelvic pain syndrome so that a reasonable therapy can be found. I don't think surgery is a reasonable alternative. I presented the original article only to show that there is an anatomical and physiological explanation for a condition that seems to exists mysteriously. I keep coming back to the same conclusion; this disease isn't just in our heads, but then again, maybe it is.

[Ausie]

I wish to say that my chronic prostatitis / chronic pelvic pain syndrome or PN or how you wish to label it occurred by trauma in my case, so there was no mystery on how my condition occurred, I still believe a very good therapist can give relief with the aid of supplements as well. I do understand that surgery is a grey area, my pain management doctor has recommended to freeze the nerve, some thing that scares the hell out of me, and I am not considering to go down that path. I do consider this a form of surgery as well. As far as strong medication goes, I am on a cocktail of meds at the moment now including morphine. A lot more research has to be done in this field, including the feed back by the success stories, it seems there is a lack of follow up with the doctors as people will travel all around the world to get relief.

[webslave]

In an interesting but predictable development, Michael Hibner of Arizona (who obtained his medical degree in communist Poland †), one of the surgeons known as a PNE surgery advocate in the US, has published an opinion (Nov 2010) in a medical news magazine to the effect that:

Pudendal neuralgia is best treated by

1. avoidance of additional insult;
2. physical therapy in conjunction with Botox and medical therapy;
3. and – if everything else fails – surgical decompression.

[/color]

So, it's clear that he too is backing away from the surgery. But he's still found a way to make money from pelvic pain by medicalising it with Botox injections, for which he claims amazing (unpublished) results.

Note that a 2010 review study by Berger et al found that Botox only provides modest improvements.

† - A few years ago, a prominent teaching professor of medicine in the US opined that doctors from the communist bloc countries were only fit to be nurses in the US, so poor was their training. And this is what has happened to many of them, eg Ilya Kaploun, a RN (nurse) at Mt Sinai Hospital, but was a MD with specialty in Urology in Russia.

kaploun.png