Surgery Success Rate

[ezer]

Stephanie, I hesitated to posts the links but here it is. I have absolutely no idea if Lissa or Christiane are onto something. It seems as though some women have bad endometriosis with no symptoms while some have bad symptoms with very mild endometriosis. Many fibroid and endometriosis patients complain of major stress along with their symptoms according to several doctors. I really am just posting it here without commentary:

http://lissarankin.com/the-critical-thi ... bly-doesnt
http://www.drnorthrup.com/endometriosis/

[stephanies]

Interesting read. I have no symptoms of endometriosis or fibroids, just an MRI report that concerns some doctors. Thank you for the links.

[ezer]

Dr. Lissa Rankin is a popular TED speaker. she is an OB/GYN. The following is very good:
https://youtu.be/7tu9nJmr4Xs

[Karyn]

Hi Ezer,

I am really curious about what your thoughts are on some of the theories on fibroids and endometriosis from Dr. Christiane Northrup MD and Dr. Lissa Rankin MD.

Thanks for providing the links. My only thoughts about this are that, I believe anything is possible.

I would have been outraged by them 3 years ago. I am not so sure anymore.

I agree. However, I don't believe these particular theories apply to everyone across the board.

Kind regards,
Karyn

[blightcp]

I noticed Dr. Conway was not in your analysis, and having had two separate surgeries from him, I thought I would add my opinion.

I am not trying to agree or disagree with anyone, I just wanted to add my opinion to the discussion.

I don't think that PN surgery makes things worse, but I think that it is often a tool of last resort that is being used too late for most people. 20 years ago carpal tunnel surgery was not as common as it is today, now it is a routine surgery for professional office work and computer professionals.

Without actually seeing the nerve in surgery, for any nerve, it is very hard to determine the full extent of nerve damage and/or entrapment. There are also many different conditions that can cause irritation or damage to a nerve.

Like carpal tunnel, that is the closest thing I can compare PN to, the condition of the nerve is a big indicator of potential recovery, if the nerve is flattened or discolored there is a big indication of permanent nerve damage. The surgeon is responsible of giving a realistic chance of recovery after the surgery. Whereas before the surgery he is guessing based on the test and exam data.

I also think that just because PN surgery does not cure pain, that does not make it a failure, preventing further damage is critical. The reproductive, bowel, and bladder systems are primary body functions that must be protected. Making the goal of preventing further damage is a legitimate surgical reason as well.

First I had TIR bi-lateral decompression in 2010. My right side has ZERO symptoms right now, I am very happy that I at least have one side that I can rely on to put weight and bend with when needed. I was lucky as Dr. Conway gave me no guarantee of total success, just a 70% chance of improvement not cure when I had the TIR done.

In the time from 2010 to 2012 Dr. Conway had learned the TG, trans gluteal, surgical procedure. My second TG surgery found the nerve adhered in one place and visibly flattened in another two, these are clear signs of significant nerve damage. The realistic outlook was limited, but hopeful. But the damage was done so to peak, but I now had a clear surgical reason for my pain, and that has helped me battle this immensely, at least now I know what is wrong.

I totally agree that the realistic surgical success rate for 0% pain is very rare for long term PN pain patients, most of us took years to get to a firm diagnosis and that was detrimental for the PN itself. We can't blame the surgeon for that in most cases. We can however expect the medical community to be more aware and pro-active about diagnosing and treating PN as a real issue. Hopefully that is changing.

Carl

[ezer]

Carl, for me a 50% pain reduction in pain would have been remarkable. I would have said it was a great success. I really never expected 100% cure from surgery. The people in my survey had no reduction in pain.

I also think that just because PN surgery does not cure pain, that does not make it a failure

I am not sure we can define success by the surgeon telling us that we were found to be entrapped. Surgeon 1 said I was very entrapped. Surgeon 2 said I was very entrapped also but that surgeon 1 was all wrong and I was not entrapped where surgeon 1 decompressed. It is not scientific.

preventing further damage is critical.

I am not sure there is irreversible damage in the first place. I don't dispute that the nerve is severely compressed by years of muscles spasming but in my case, it was reversible (I was never decompressed at the alcock's canal which is where my entrapment was diagnosed by 5 physicians and 2 imaging studies).

[stephanies]

One reason I did not believe that surgery was responsible for my nearly pain-free state from 2008-2013 was because there are very few people who recover to the extent I did from surgery. I can only think of a couple. I only had slight pain when pressure was applied to certain spots in the vulva, which I (obviously) made sure rarely happened (unavoidable at the obgyn for an annual, for example). My rectal, sitting pain resolved 100%. I was 100% normal. I sat like a normal person. I worked part-time, was room mom at the kids' school, went skiing, horseback riding, etc. Nothing caused even a slight flare, except maybe a small itch a day or so before my monthly cycle. My pain was unchanged after my Filler surgery, which produced no post-op flare or worsening, I had a redo on the left which gave me a 9 month flare and then over the course of 2 or 3 months the pain decreased to almost zero. My right side (no re-do) also was near-perfect so how can I credit the second surgery since it was only left-sided? I have spent many, many hours these last 18 months since the pain returned left sided (and worse) questioning decisions made in the past.

[ezer]

...or a delayed cure from Dr. Filler's surgery. Just kidding!

Carl, indeed. I never corresponded with Dr. Conway's patients so I have no comment to make and he does not appear in my survey.
Why did Drs. Conway and Vancaillie abandon the TIR surgery?

[ezer]

I just saw this on a pudendal forum:

Good morning to all of my fellow sufferers. I was a member in the "old days" of TIPNA.
I read your stories and cannot help but say, please, stop. Theses surgeries aren't working. In the last eight years, I know 30 or so failed surgeries, from all of the surgeons, and their quality of life is GONE. More problems ensue. People are bedridden. The surgeons do not care about you when 6 months later you have signs of re-entrapment. I want to save people. I was one of the failed surgeries. My doctor would not return my phone calls months postop and I was told by the secretary to contact pain management. He didn't even care how his surgery turned out! I never felt so alone and afraid. I have been off the sites for awhile, but have a gal in my town outside of XXX who is in terrible shape. I can't stand by and let this happen to anyone else. Thank you.

[Violet M]

I know 30 or so failed surgeries, from all of the surgeons, and their quality of life is GONE. More problems ensue. People are bedridden.

I have been saying for years that you shouldn't have surgery unless your quality of life is already gone. If you are mostly bedridden, have tried everything else, nothing else worked, and you are willing to take the chance of possibly getting worse, then surgery remains as an option. I would never say to someone who has exhausted their other options, "don't try surgery", because surgery is what gave me back a life. I think it's also important to consider whether your symptoms, history, and clinical exam match the criteria for a nerve entrapment, which mine did.

The surgeons do not care about you when 6 months later you have signs of re-entrapment

From what I've seen most of the surgeons are trying their best to help their patients by either modifying the surgical approach or offering additional treatment options with the teams they work with. But surgeons are trained to do surgery and if surgery doesn't work there isn't a lot more they can do themselves. So it would only make sense that they would refer you to someone else such as a pain management doctor if what they tried didn't work. I don't think we can say that means they don't care.

Violet