Pudendal Nerve Surgery (PNE aka Pudendal Neuralgia)

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superuse
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PNE surgery warning

Post by superuse » Sat May 17, 2008 3:26 pm

I had a guitar string like pain from my prostate down thru the sitbone to my left heel (funny how that side always has problems 3:1 vs right). Felt like my Achilles tendon was tearing in half. Have seen several other members mention the string plucking symptom. Mine seemed to originate from over aggressive hamstring stretches.

There should probably be a sticky for lurkers, browsers etc.. about PNE. One kid, Mr. J lets call him, was looking forward to his surgery trip like "a kid at Christmas" (his description). Once people get surgery, bacteria etc on their mind, it's hard to stop them. What's unusual is that many with symptoms less frightening than numerous men here (who have greatly recovered) are going from onset to surgery in less than 6-9 months.

Info on this is much more available now than years ago. The problem is that many have noticed a large decrease in symptoms (50-70% or more) within about 24 months or less of time regardless of what they did after onset, without surgery. This is about the same recovery reported 12 or 18 months after surgery. There seems to be a large bias in success with women who have had hysterectomies. (I believe the ligaments in question are actually sutured and disturbed in a hysterectomy), and the number with problems (amongst the 10s of thousands of hysterectomies every year) seems small.

There have probably been less than 2000 of these surgeries worldwide in the last 9 years, done by less than 20 physicians. Most have been done by less than 8-10 it seems. This is probably in comparison to 1million? 5million? heart bypasses and operations done worldwide (perhaps one of the DR.s here could help with the #'s) and at least 100,000 (a quarter million? more?) surgeons who could qualify to perform the release surgery. For 2000 or so surgeries the documentation and publications are scarce (and they don't need to be).

A Sticky Post of the type "Yes we know about the PNE theory and these are some facts" in bold, standing out for all passers by to see would be very useful. This is all relevant because of the availability of info now can have a determined boy (for the quick fix) in France, Houston etc in less than 3 months (similar to our bacterial folks with Dr Song). Especially when they start on the "better get it done early for successful results" stuff.

Webslave would have to evaluate this but I've heard numerous comments somewhat similar to Mr. J's on the other board and the "kid at Christmas" thing blew me away.

--jjf
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail

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Re: Pudendal Nerve Surgery (PNE aka Pudendal Neuralgia)

Post by webslave » Fri Oct 22, 2010 8:10 am

Readers should note that the major internet forum that promotes pudendal nerve decompression surgery is run by a man who has had the PNE surgery, and even had another surgery to remove his coccyx (a coccygectomy), all without any success. He is still in pain to the extent that he has suicidal thoughts, by his own public admission. However, despite the complete failure of surgery for him, he is vehemently against many of the more conservative approaches we cover here. I've had a number of email exchanges with this person, but it's like hitting my head against a wall. :62_58_40:

Also see viewtopic.php?p=41489#p41489

It's worth taking heed of what Dr Skinner says about this:
CONTROVERSIAL ENTRAPMENT SYNDROMES FOR PAINFUL CONDITIONS

Surgeons have been trying for decades to identify peripheral nerve entrapment sites to characterize and to treat various pain syndromes. Quite simply, these conditions are either underdiagnosed or overdiagnosed. In extremes, there are zealots and nihilists. The true prevalence is probably somewhere between the two vociferous groups. Historically, and not uncommonly, there tends to be a pattern with some of these disorders. A single report provides an anatomic explanation for a new entity with encouraging (often optimistic) results. This is followed by a flurry of publications supporting the diagnosis and introducing some provocative manoeuvres. Thereafter, sentiment and enthusiasm tends to wane, but not dissipate.
In my opinion, this perfectly describes the situation with PNE. It's currently very much still overdiagnosed by a small group of surgeons, but enthusiasm is waning. Increasingly the zealots are pegging their hopes on individual surgeons, who themselves rely on the so-called unique skills of specific imaging experts.

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Re: Pudendal Nerve Surgery (PNE aka Pudendal Neuralgia)

Post by webslave » Wed Aug 03, 2011 2:16 am

The internet is full of cautionary testimony about this surgery. For instance, today I saw this exchange:
Denise wrote:Just before nerve testing (approx October 2002) and surgery I was working full time with relatively mild pain (usually 1-2, sometimes 3) UNLESS I had to work more than 8 hours, in which case the pain could increase to 4-5-6. .... The treatments that helped before surgery were internal triggerpoint release... then external triggerpoint release treatments.... MY BODY WAS INCREDIBLY BETTER BEFORE SURGERY THAN AFTER. My surgery was in Houston in 2003. I have had many difficult ups and downs since the surgery and questions about what the hell was going on with my body. At first I was very hopeful and determined to take the very best care of my body after surgery, and I thought it was just taking a long time to heal as I had been told (I was told up to 18 months to heal). [admin comment: actually, according to the doctors who push this surgery, results are usually almost immediate, within 4 weeks of surgery, see PMID 19323602]

Currently, July 2011, I am laying down about 20 hours per day to avoid bad pain. For the incredibly short appx. 4 hours I am up, I alternate between sitting for short periods, standing short periods and of course laying down. During the daytime I lay face down, and at night I lay on my sides alternating side to side when it gets painful.
John answered her:
John wrote:Denise, it's 9 months since I had bilateral surgery with Dr. Ansell. I am still not sure if I will have a good outcome or not. [admin: this long after, the answer is NOT]. So far I am in more pain than before surgery...
Warning flags are waving! :sad2:

Here is a balanced view of genuine pudendal nerve palsy (which BTW is absent when lying down):


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