Surgery

[ezer]

Alan, I am not sure she knows.
She also claimed 90% success rate but then her only testimonial on her website is this guy that says that pelvic floor PT at Pelvic Health Rehab gives him several hours of pain relief:

http://www.pelvicpainrehab.com/presstype/testimonials/

You would expect a testimonial to be from somebody that is very satisfied and almost cured. Instead we hear somebody that looks visibly in pain and gets only "several hours of pain relief" after PT. Is that the most pelvic floor PT can do? Is that the best patient they can interview?

Sadly that is my experience too.

[Violet M]

Violet, if there are forum posts by patients who were told by surgeons, after the surgeons carried out surgery, that they were not entrapped, can you please give the links?

It was on the old tipna forum which is no longer accessible. I can't remember if anyone on this forum has ever posted that they had surgery and weren't entrapped.

Alan and Ezer, I respect your experiences but I'm not sure what the point is -- that you had numbness but no pain. Prof Robert is a neurosurgeon who has performed surgery on over 1000 patients (way more than the 22 Ezer has spoken with) and has published in peer reviewed literature. Do you really think he could get away with describing PN as a pain condition as opposed to numbess if nerve compression were well-known in the medical community as only causing numbness, not pain? What about carpal tunnel syndrome, another type of nerve compression? http://www.webmd.com/pain-management/ca ... e-symptoms
Symptoms can include pain, numbness, pins and needles, or a combination of those.

Violet

[Alan1646]

Violet, I don't know. On my pain management course, we were told that there is no clear correlation between many "abnormalities" that show up on x rays and MRI scans and pain. Some people have quite clear "problems" in scans such as bulging discs compressing nerves or bones protruding onto nerves-sorry I don't know the technical terms off hand- and yet have no pain at all, while others have no problems showing on scans yet have severe pain. Surely, some nerves get compressed regularly yet there is no pain? Also, we were told - in order to challenge catastrophic thinking- that pain and the amount of pain felt does not necessarily mean that there is a worsening of an internal condition or even a serious physical problem. Sometimes, it's just pain.
When someone is in bad pain , they can be very vulnerable, clutching at any straw . I regret having nearly all of the treatments I've had ( and often paid for) over the years both conventional and alternative because most of them have not helped at all. Only the medication I got in the first instance from my Gp helps. Some of the treatments I've had have caused bad pain "flares" that have lasted months.
I asked some questions about the Wise Anderson study that were not answered: was the study independently checked and supervised? Does it count as high quality evidence? Are there any other studies that would be accepted as high quality evidence that physiotherapy is an effenctive treatment for PN?
Perhaps surgery should be carried out only as an absolutely last resort-but there seems to be no clear way of telling whether someone will benefit from surgery and there are worrying reports of people getting worse after it.

[ezer]

Violet, you cannot compare my candid correspondence with post PNE surgery patients with patients filling up a questionnaire or responding to a call from a nurse or the doctor. There are a myriad of reasons to give some moderate good news. One of which is that you don't want to burn bridges or you think that you may need the same doctor for another surgery. There is also the wishful thinking effect during a challenging post surgery period.

It is well known that part of a placebo response is the desire to please the doctor.

As I mentioned before, in my case, a slight improvement unrelated to the pudendal nerve was seen as a positive outcome.
I am always amazed by the fact that Dr. Bautrant and Dr. Hibner, both charismatic and warm surgeons have a slightly higher success rate.
It is also interesting that surgeons that tried to replicate Dr. Bautrant's technique with his Fancy-Shmancy electrical testing during surgery were unsuccessful and abandoned the TIR surgery.

Do you believe Dr. Dellon and his 100% success rate? Why not? He has many "peer reviewed" publications.
Do you believe Dr. Filler and his 85% success rate? Again, he has prestigious peer reviewed papers.
Do you believe Dr. Jerome Weiss and his 83% success rate with his conservative treatment?
Do you believe S. Prendergast and her 90% success rate?

If you combine the success rates reported from conservative treatments (that we all tried for extended periods) with the surgery success rate (if you are unlucky with conservative treatments), you should get logically a 95+ % global success rate.

You can make fun of my small sample size of 22 people but the numbers those surgeons report don't gibe Violet.

It is bad science. The fact that PNE studies are published does not mean PNE is proven.

Many medical studies are proven wrong. As we know peer reviewed does not mean proven. Studies on the safety of thalidomide were published.

http://www.theatlantic.com/magazine/arc ... ce/308269/

[Alan1646]

Ezer, I found this as an example of how surgical outcomes can be defined.
"Q: When is the surgery considered a failure?

Dr. Hibner:

From a research perspective what is considered a positive outcome, and I’m not saying this is good for the patient, but just for research purposes an improvement of pain of 20 percent is a positive outcome. Looking at our patients, 70 percent of our patients have an at least 20 percent positive outcome."

http://www.pelvicpainrehab.com/pelvic-p ... d-part-ii/

[ezer]

Thanks Alan.

If a post-op patient of Dr. Hibner reads this, it would be great if we can get the type of follow-up and progress monitoring they experienced (monthly [anonymous?] questionnaires, phone calls from Dr. Hibner or assistant etc.). Also it would be useful to know if they were followed until the 2 year mark.

A while ago it was reported by blossum that Dr. Hibner was much more picky selecting surgery candidates. That obviously tells me that there was a problem with the lack of positive outcome.

[Alan1646]

In the same article , Stephanie Prendergast makes this statement:
"Over the past 13 years, I cannot count how many PN post-operative patients have called our office concerned that they were ‘re-entrapped’."

[ezer]

alan, as you know in the psychosomatic jargon you are familiar with, it means "symptoms imperative". No matter what, the symptoms will always return in a slightly different form. I have heard so many times: "I am so unlucky, my PN was better but now I suffer from [you name it] "
She wrote already in the blog entry you posted that her patients are in the fight/flight mode. It is the hallmark of self-maintained chronic pain.

Stephanie may not realize it but she describes to a tee psychosomatic or psycho-physiological pain.

[ezer]

Violet --you mention carpal tunnel syndrome. Some say it is highly psychosomatic. When people were using typewriters, the pathology was virtually unknown but since we move our mice a couple of millimeters left and right we suffer terribly. Japan has a very low incidence of CTS. Same for whiplash: It is virtually unknown in Lithuania and an epidemic in Finland next door.

Carpal tunnel syndrome and work organisation in repetitive work: a cross sectional study in France. Study Group on Repetitive Work.
http://www.ncbi.nlm.nih.gov/pubmed/9624269

Common whiplash: psychosomatic or somatopsychic?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1072881/

[IHatePNE]

@ Violet

QUOTE: "It was on the old tipna forum which is no longer accessible."

The old TIPNA forum can be accessed by going the "Wayback Machine" at archive.org/web/web.php