Surgery Success Rate

[LottaNerve]

That's a shame that Dave was cut out of the forum. When I read back over the posts, it sounded more like he was responding to questions posed to him, not advertising. It was only when he was asked several times and specifically how to go about doing what he did, that he revealed he had started teaching it.
I thought there was a process for situations like this, with the first step being a warning and either deleting the comment or allowing the person to edit it?
Respectfully,
Sharon aka LottaNerve

[LottaNerve]

Blossum and Barb, I just read your comments about success with your PNE surgeries, and I want to let you know I'm delighted!
I know so many sad stories, where people I have come to know and care about are suffering worse after their surgeries, (plus my own failed surgeries with Dr. Hibner and Dr. Dellon), that it is wonderful to hear that is not always the case.
I wonder if the difference is that you both were injured during the vaginal mesh surgery, which caused or resulted in actual entrapment of the pudendal nerve. Whereas many of us do not have one precipitating and specific injury. My PNE started out of the blue and gradually worsened; and none of my nerve blocks or surgeries changed the location or nature of my pain at all. Plus I have IC, which I've been told is connected... who knows? Perhaps our two pudendal neuralgias are very different problems with different originations and solutions. I often think my PN has become embedded in my central nervous system/brain so there is no way to free or "cut out" the offending nerve, because its part of a system. Someone in this thread mentioned they thought the pain was just re-routed.
It seems like this would be a good place to start searching for answers! Too bad there is no study comparing your cases with cases like mine.
Thanks for speaking up! I hope we find some answers during our lifetimes.
Sincerely,
Sharon aka LottaNerve

[stephanies]

Hi Sharon,

I agree that it seems that some people have PN pain seems to correlate with entrapments and for many others it seems to lie in some other mechanism within the nerve itself or even somewhere else in the body or the brain. With regards to DaveM, I am very happy that he is cured. It is my opinion, however, that a certain level of "advertising" was evident in many of his posts. Once he identified himself as a trainer and it became clear on this thread that he has a financial interest in getting people to sign up for the program that he is promoting, I do not believe that his posts were in line with the purpose of the forum. When someone mentions thay have found a cure to this horrible condition, especially after surgeries and a long period of pain, it is a certainty that they will get PMs. Last spring, when I thought I had greatly improved through stretching and posted that on the forum, I got many people messaging me asking what kinds of stretches I was doing, how often, etc. It is natural for those of us in pain to seek assistance for those of us who have found answers.

All my best,
Stephanies

[stephanies]

Also, I am so happy for Blossum and Barb that they are seeing improvements!

[Rivahgal]

G

[ezer]

I don't see why DaveM's practice could not be listed as a resource on the home page under providers. You could also list mindbody experts like Abigail Steidley or lorraine Faehndrich. We have now 3 or 4 patients including myself that have recovered using alternative methods for healing (I personally know more people than that but they are not on this forum). I think it deserves some place next to surgery with its ahem... not so great outcome.

We show utter deference to and list some PNE doctors whose track record of success are nil as far as I can tell on this forum.
You don't want to be seen as the "Pudendal surgery site" which I am afraid is how pudendalhope is perceived because most of the advisers are pudendal surgeons.

Pudendal nerve entrapment is not exactly a diagnosis devoid of controversy within the allopathic medical community itself. It is as controversial if not more than some alternative theories:

http://www.ncbi.nlm.nih.gov/pubmed/19238769
Pudendal neuralgia. Fact or fiction?

[Rivahgal]

Agree with Ezer. If surgeons are listed that is advertising and it would imply surgery, injections, physical therapy, and other forms of conventional medical practices as the preferred treatment method and excludes other forms of healing. In the bigger picture, the amount of time, money and damage inflicted to the body by surgery and injections are far more problematic than exercises and an emphasis on restorative bio-mechanical alignment!

Rivahgal

[ezer]

I know we say that we advise seeing a pelvic floor physical therapist first, then have nerve blocks, maybe have botox, and only then consider surgery.
It is all well except that pelvic floor physical therapy does not work (yes, you get temporary relief of your symptoms that is probably due to increased blood-flow). Nerve blocks never work. Botox is hit or miss (mostly miss). So we are all sooner or later facing surgery as a natural progression with its cohort of "PN aware" surgeons and experts (conveniently listed on the providers section), trying to believe their dubious statistics, with at the end often disastrous results.

Why not list other modalities? There is nothing particularly controversial or dangerous to advocating proper posture to limit pressure on the pudendal nerve or to consider that our brains make our pelvic floor spasm and that there is a way to stop that without using a scalpel.

There is not much to back up the claims that pelvic floor/trigger points physical therapy works, yet it is accepted here as proper treatment.

[Ray P.]

Hi Ezer
I looked at your history. Are you saying you were cured by mind body practices?
If you are afraid to say you were here, can you email me; my email is rayp@sonic.net

Ray

[ezer]

Ray,
I am 100% cured by mindbody practice. My success with it was phenomenal.
I explained at length my journey:
http://www.pudendalhope.info/forum/view ... =74&t=6222
http://www.pudendalhope.info/forum/view ... =36&t=6352
Also on KrisG's thread:
http://www.pudendalhope.info/forum/view ... 341#p46341

Please read through the threads and I would be delighted to guide you if you are interested.