Surgery and Re-entrapment

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Re: Surgery and Re-entrapment

Postby chenonceau » Sat Feb 25, 2017 1:19 am

nonsequitur wrote:Chenonceau this is not correct. de Bisschop must use an anesthetic. All steroid nerve blocks contain an anesthetic if not for diagnostic, it is used to ease the pain.


Must ? Why ? He told me that the anesthetic was damaging the nerve. Do you want a copy of my prescription for the injected steroids ?

nonsequitur wrote:You are saying that Nantes is not following their own "gold standard" Nantes criteria!!!??? Surprising? Not really. It shows again how sketchy that criteria is.


I think they published a paper about it, they did studies with steroids + anesthetic vs. anesthetic only and did not found significant pain improvement when using steroids.

nonsequitur wrote:Here is the full Nantes criteria:


If they improve their definition, i don't see where is the problem...

nonsequitur wrote:Au pays de Descartes, ce n'est pas très cartésien.


Good one... it's called empiricism ;)

Do you agree with my number or do you agree with de Bisschop that claims he has a 89% success rate?


Even Fidel Castro did not have these kind of numbers :lol:

You probably go on pudendalsite and also witness that even people that said they improved after surgery tend to relapse (despite the moderators that silence all dissident voices over there).


I do (same nickname). That's depressing to say the least.

On the success section of pudendalhope, 2/3 of people that claimed that surgery cured them have relapsed. It does not contradict my statistics. Quite the opposite.


I do not contradict you on the stats, simple on the recipe of de B.'s nerve blocks !
Testicular pain started Jan '15 - off by may '15
Back Pain + Pain when seating Jan '16
Loss of sensation when urinating Mar '16
Urinary Retention Aug '16
Diagnosed PNE Sept'16 - 2 Nerve blocks Nov '16
Diagnosed Myofascial Syndrome March '17
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Re: Surgery and Re-entrapment

Postby Andy_Pablo » Sat Feb 25, 2017 1:31 am

Im sure all medicine changes over time as more is learned. If we stuck by an original conclusion when new evidence presents itself then we would not progress much as a species. Not everbodys situation is the same, so its stands to reason that we should not use the same treatment for every patient. Its just unforunate for us that we are being treated while PN/PNE is still in its infancy. And that is why it would be unfair to visitor on sites like this one if any single treatment option is pushed more than any other. Personally, I can only give details of my personal experience & allow any visitor to make up their own mind on their treatment options.
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Re: Surgery and Re-entrapment

Postby nonsequitur » Sat Feb 25, 2017 4:09 am

Must ? Why ? He told me that the anesthetic was damaging the nerve. Do you want a copy of my prescription for the injected steroids ?


I believe you. No anesthetic on a nerve block??? That must be very very painful. It is insane and unwarranted. The anesthetic damages a nerve?? He must be joking. Dentists inject lidocaine and xylocaine all day long and it gets quickly eliminated. On the other hand, steroids have a crystal like structure that do damage nerves. I think he has it backward.

I had 6 steroid nerve blocks from 4 different physicians. It was always mixed with an anesthetic.

I am still unclear about de Bisschop's 2009 versus 2010 guideline on the significance of his steroid injection (not a block apparently).

If they improve their definition, i don't see where is the problem...


Not really improved. Dramatically simplified for sure with not much substance anymore. A single anesthetic block. Wow. It is easy to get surgery in Nantes --which I am told is very much the case.

It also means that Robert and de Bisschop interpret things completely differently (as you pointed out). Therefore for Nantes, all that matters is an anesthetic block and for de Bisschop it is the long term effect of a steroid block. I am still not sure if it is the positive or negative effect de Bisschop is looking for (as he seemed to have flip flopped on that issue).

In regards to pudendalsite French forum, I just spent an hour computing the post-surgery reports from the surgery page (posts from 2016-2017). Many people relapse. I am not registered and all of it is openly visible so those are not great secrets I am revealing:

concerto Fail
lilidu Fail
ewema Improved
cihani Fail
fanon29 Fail
John Fail
tsigane Improved
mauditsmaux Fail
npnc49 Fail
yan28 Improved
cousin Fail (relapse)
vicky78 Fail
marinette33 Improved
opaline Fail
Philippe Fail
JCO2 Fail
Hughe44 Fail
august Fail
tulipe Fail (relapse)
cosmos Fail
polisere Fail
helene Fail
moustik Fail
doudoune Improved
tulipe Fail
digitale Fail (relapse)

5 improved (not cured by far)/26 = 19% SURGERY "SUCCESS" RATE => again in line with my 10-20% success rate I found on this site and especially the FB forum.

And when I write "SUCCESS" it is a real stretch. These people are still on pain medications, cannot drive very far, have flare-ups etc.

I do not contradict you on the stats, simple on the recipe of de B.'s nerve blocks !


So do you trust de Bisschop? 89% success rate? Did you confront him?

I know how it works. I have been at the receiving end and persuaded to give good news over the phone by the surgeon himself (not some anonymous questionnaire).

All of this is not surprising. After my 1st pudendal surgery I had no pudendal pain for 1 week. I was pretty excited and reported victory on this site.
After my 2nd pudendal surgery, I had absolutely no pudendal pain for a full month. But then the pain came back. yet for the next 6 months I was telling people that I was 30% better. Then I finally realized sadly one day, that I was exactly the same.

It is very easy to explain when you realize it is a somatoform pain syndrome. Surgery is a massive distraction but as you recover the pain slowly creeps back because you start to clench your pelvis unconsciously again.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
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Re: Surgery and Re-entrapment

Postby nonsequitur » Sat Feb 25, 2017 7:50 pm

Andy_Pablo wrote:Im sure all medicine changes over time as more is learned. If we stuck by an original conclusion when new evidence presents itself then we would not progress much as a species.


andy_pablo,

I really am truly sorry for what you endure. But we should stop kowtowing to the doctors. To remove the most time consuming step in a protocol is not earth shattering science. It is not helpful to stand in awe at everything the PN-aware physicians do, publish, or say.

I report what I experienced and what many others that have contacted me spontaneously also experienced. Again, we were 6 patients from this forum exchanging emails or calling each other after surgery. Not a single one of us improved with that surgeon.

Everything you posted screams somatoform pain syndrome, more than any other poster on this forum. You do whatever you want with this information but there is a lot of free information and help available. I cringed when I saw that you became a moderator. Not that you are not worthy of it but I realized at that moment that by doing so IMO you will have a tough time healing.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
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Re: Surgery and Re-entrapment

Postby Violet M » Sun Feb 26, 2017 5:52 am

nonsequitur wrote:Violet, do you not agree that the discrepancy between Dr. Robert and Dr. De Bisschop (an ex-associate of Dr. Bautrant) around the significance of nerve blocks is shocking?


No, Ezer, I don't think it's shocking and I will explain why. There is evidence that regional anesthetics into a nerve can damage the axon of the nerve. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2885284/ I believe Dr. DeBisshop may be focusing on that particular study or perhaps other similar studies if they exist, whereas according to a recent article I posted in the library section of the forum, the Nantes team has been studying the efficacy of steroids in pudendal nerve blocks and concluded that they were not effective. As Andy and Chenonceau have pointed out, medicine is still evolving, and for many different diseases, not just pudendal neuralgia, the science is not completely settled yet. What would be more shocking is if someone claimed the science was settled. I have never been a huge fan of nerve blocks but I can see why the doctors feel it necessary to try treatments that are more conservative than surgery, and if there is evidence in past literature that steroid nerve blocks work for some neuropathies, or that anesthetic nerve blocks can be used to diagnose, I can understand why physicians would extrapolate and try using them for pudendal neuralgia. I actually respect these doctors for continuing to do research and attempting to improve on their solutions.

nonsequitur wrote:Chenonceau this is not correct. de Bisschop must use an anesthetic. All steroid nerve blocks contain an anesthetic if not for diagnostic, it is used to ease the pain.


Regarding nerve blocks I believe Chononceau may be correct here. Maybe you have never had a nerve block, Ezer, so I wouldn't blame you if you don't understand exactly how they are given. When given through the buttocks to the ischial spine or Alcock's canal, a very long, relatively large gauge needle is used, so yes, I agree it would be painful without anesthetic. But the anesthetic in that large syringe is not what is used to numb the buttock area before the large needle is inserted. Typically a smaller syringe with a small guage needle is used to numb the buttock area before the larger needle is inserted. At least that is how mine was done. Once the buttock area is numb, the larger needle is then inserted to the deep target area using imaging. This can be somewhat painful. Once the needle reaches the target area , whatever medication is desired can be injected through the larger needle at the main trunk of the nerve -- either marcaine or steroid, or both. If the physician believes steroids are effective for reducing inflammation in the nerve they are probably going to use a steroid. If they want to temporarily numb the main trunk of the nerve for diagnostic purposes, they will likely also use an anesthetic like Marcaine. Either of those medications could be optional. The Marcaine isn't used as an anesthetic to numb you prior to the procedure. It is used to diagnose whether or not you have pudendal neuralgia. The actual injecting of the Marcaine or Steroid is pretty quick and has nothing to do with making the procedure itself less painful. Once the medication is injected the needle is removed very quickly. So I believe what Chenonceau said about Dr. De Bisshop not injecting anesthetic next to the main trunk of the nerve is entirely possible.

nonsequitur wrote:andy_pablo,

Everything you posted screams somatoform pain syndrome, more than any other poster on this forum. You do whatever you want with this information but there is a lot of free information and help available. I cringed when I saw that you became a moderator. Not that you are not worthy of it but I realized at that moment that by doing so IMO you will have a tough time healing.


You know Ezer, it is inappropriate to be insisting to Andy that more than any other poster on this forum you think he has somatoform pain syndrome. And I cringe when you tell Andy he's going to have a tough time healing if he's a moderator. I've known other mods on this forum who have healed and moved on with their lives. You need to tone it down Ezer, or the moderators will ban you again for personally attacking people again. This is in violation of the terms of use for this forum. You have already told Andy previously what you think. Now you need to let go of it. You are free to post about the mindbody approach on this forum but you aren't free to badger other people about it.

And by the way, if every conventional treatment has a placebo effect as you say, maybe mindbody is also a placebo. Unfortunately, it didn't work for me.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Surgery and Re-entrapment

Postby Andy_Pablo » Sun Feb 26, 2017 2:05 pm

I agree. A psychological evaluation from a stranger across the internet is a little strange when research papers & findings are picked apart. However, I wish you nothing but continued success Nonsequitur/Ezer with your treatment. There is nothing more to be said from myself on the matter.
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Re: Surgery and Re-entrapment

Postby nonsequitur » Sun Feb 26, 2017 6:28 pm

And by the way, if every conventional treatment has a placebo effect as you say, maybe mindbody is also a placebo. Unfortunately, it didn't work for me.


You always found that stuff goofy so how do you know it would not have worked for you? You read Sarno's book and immediately concluded it is quackery. Let me remind you that a chiropractor made you pain free for 24 hours before surgery. What a miracle when your nerve was apparently so damaged and entrapped at multiple locations.

I have no problem believing in PNE as a consequence of a botched surgery, mesh, or a bad accident. When exercising, biking, carrying a coffee table, or sneezing, I have serious doubts. Dr. Rodney Anderson at Stanford says PNE exists but is excessively rare.

There are major inconsistencies in this PNE theory. 3 years to heal from surgery? Even Dellon or Filler say that is a joke. You can't conclude it is the surgery that helped you 3 years later.

Look I am not diagnosing you with a mindbody syndrome but you cannot deny the fact that catastrophizing and anxiety prior to surgery may have had an amplification effect on your pain or that surgery was not 100% responsible for your recovery.

Maybe you have never had a nerve block, Ezer, so I wouldn't blame you if you don't understand exactly how they are given


You are visibly not reading my posts. I had 6 pudendal nerve blocks. Weiss, Jordan, Filler, Sherry. Guided, non-guided, MRI guided. I had the entire gamut. They always contained an anesthetic.
They all told me that the bupivicaine/steroid combination was to block pain signals short term trying to reset the nervous system and provide pain relief, reduce the inflammation long term, and also to try to expand the area in case of scar tissue entrapment. In fact Filler injected a third chemical to help with scar tissue. After the anesthetic wore off I was in terrible pain for weeks.

They pick bupivicaine (Marcaine) because it has the longest half-life of all anesthetics.

Of course the bupivicaine was to both ease pain and to diagnose.

As Andy and Chenonceau have pointed out, medicine is still evolving,


I read French. You don't. It is obvious that de Bisschop is flip flopping and that Nantes is trying to expedite things by skipping the steroid injection so that they can quickly perform surgery without a 2nd visit. It is a factory there. This is not science and progress at work.
With this great advance in diagnostic, does the surgery work better. No. 15% success rate 10 years ago and 15% now.

You know Ezer, it is inappropriate to be insisting to Andy that more than any other poster on this forum you think he has somatoform pain syndrome. And I cringe when you tell Andy he's going to have a tough time healing if he's a moderator.You need to tone it down Ezer, or the moderators will ban you again for personally attacking people again. This is in violation of the terms of use for this forum.


I have attacked Andy? In what way? I am just saying that what he posted screams mindbody syndrome. I am not saying he has a mindbody syndrome. Have I used aggressive language? Inappropriate language? Profanities? Foul language? Bad words? vulgar language? lewd language? Expletives? Threatening language? No.

PNE-doubting is decidedly a heinous crime on this forum.

Please ban me just like you have banned ezer (me) and DaveM the RE instructor for offering an alternative explanation and not bowing to the enlightened PNE-physician advisers and their inflated success rate.

15% surgery success rate Violet. It is a disaster.
Last edited by nonsequitur on Mon Feb 27, 2017 12:49 am, edited 10 times in total.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
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Re: Surgery and Re-entrapment

Postby nonsequitur » Sun Feb 26, 2017 7:23 pm

Andy_Pablo wrote:I agree. A psychological evaluation from a stranger across the internet is a little strange when research papers & findings are picked apart. However, I wish you nothing but continued success Nonsequitur/Ezer with your treatment. There is nothing more to be said from myself on the matter.


But you had no problem following Violet's recommendations and lead (a stranger on the internet just like me) and had surgery. What I am recommending will not hurt you beside wasting a few days reading about it. It would cause you no harm --unlike PNE surgery that you embrace with so much gusto.

Thank you for the well wishes Andy but I am not following any treatment. I have been pain free since 2014. I am not on disability anymore and I have been back at work since after a 6 year hiatus, even bed-bound for several months in pain, due to what you call PNE.

research papers & findings are picked apart.


I am a scientist Andy. I have peer-reviewed papers that I presented at the IEEE Nuclear Science Symposium and I have 5 patents. I recognize quackery when I see it.

Look some very distinguished internationally recognized scientists (not some obscure PNE MDs from not particularly stellar universities) have published on the subject of somatoform pain syndromes:
Dr Candace Pert (John Hopkins), Dr. Peter Levine (UC Berkeley), Dr. Robert Scaer (Rochester Neurology), Dr. Robert M. Sapolsky (Stanford), Dr. Daniel Siegel (UCLA) etc. They are internationally recognized figures and what they have published is grounded in modern neuroscience unlike some of the PNE publications that are definitely lacking in that respect.
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Re: Surgery and Re-entrapment

Postby Andy_Pablo » Sun Feb 26, 2017 9:49 pm

I respectfully disagree with you on my reasons for surgery. I had surgery from the advice of several doctors who had looked at me over the course of twelve months.

But that is besides the point.
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Re: Surgery and Re-entrapment

Postby nonsequitur » Mon Feb 27, 2017 2:55 am

Andy_Pablo wrote:I respectfully disagree with you on my reasons for surgery. I had surgery from the advice of several doctors who had looked at me over the course of twelve months.

But that is besides the point.


If I remember correctly you saw Dr.Greenslade that gave you 3 blocks. Some were positive, some gave you more pain. It was pretty inconclusive to be honest from what you wrote. You then decided to have surgery with Mr. Wong, Dr. Greenslade's associate (privately probably, I am not sure the NHS endorses and pays for PNE surgery). Was there any other doctor besides Dr. Greenslade that advised you to have PNE surgery? Did you consult with Dr. Baronowski?
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