Publication Abstract - A Must Read!

[RJR]

Having gone the gamut of conservative treatment for PN, and then having TG surgery 4+ years ago that immediately and permanently took away my deep burning perineal pain and gave me my life back, I cannot reconcile how one could conclude that PNE is a myth.

Other indicators:
-seeing the severity of entrapment recorded in the video of my surgery; and
-one pre-op MRI that concluded entrapment by the STL (verified at surgery one month later), and two post-op MRI's that concluded compression fixed. All MRI's were conducted and interpreted by professors of radiology at two medical centers not affiliated with the surgery provider.

It pains me greatly to see open dialogue on this...possibly influencing suffers to discount a potential path to a better life.

I get that surgery is not appropriate for all. Each of us must perform due diligence, seek the advice of experts, and make the best decision.

V/R,
Bob

[cpps-admin]

I am obtaining the full paper "Anatomic Variations Of Pudendal Nerve Within Pelvis And Pudendal Canal: Clinical Applications" to see if I can shed some light on the abstract's comments.

[ezer]

RJR,
It equally pains me to see kids that had pain after a sexual encounter and that are advised on this forum to go consult with a "PN aware" doctor as soon as possible "before the nerve gets more damaged". It panics them and surely sooner or later they are thrown on the conveyor belt to surgery by the usual suspects. They need reassurance and not that PNE rubbish. I know a few of them that went down the surgery route. Sad and irresponsible.

You are a sample of 1 RJR. Statistics matter.

TG surgery 4+ years ago that immediately and permanently took away my deep burning perineal pain and gave me my life back

I remember that you were considering a second PNE decompression surgery after your first one RJR a while back. Strange. Why would you consider a second surgery when the first one was instantly successful?

[nyt]

I've been giving this abstract some serious thought because it is such an important observation for this forum. I have thought a lot about the hundreds of animal surgeries I have done and there is a big difference between connective tissue versus scar tissue. I have come up with a different conclusion than the authors and I'm going try to organize my writing in a logical manner to present this new line of thinking.

From my Taber's Cyclopedic Medical Dictionary Edition 17

Connective tissue definition "Tissue that supports and connects other tissues and parts. The cells of connective tissue are comparatively few in number, the bulk of the tissue consisting of intercellular substance or matrix, the nature of which gives each type of connective tissue its particular properties. Connective tissues are highly vascular with the exception of cartilage. Connective tissue proper includes the following types: mucous, fibrous (areolar, white fibrous, yellow fibrous, or elastic), reticular and adipose."

Scar tissue definition "Mark left in skin or internal organ by healing of a wound, sore, or injury because of replacement by connective tissue of the injured tissue."

I looked further into scar definition and formation. The formation of scar tissue is quite an amazing process. For a free paper that reviews how the body builds scar tissue see the link below:

http://www.physther.org/content/69/12/1014.full.pdf

The scar is composed of the same cell type as the connective tissue it is replacing. However, the composition of the scar tissue is different in that collagen is overexpressed. The pattern is not organized the same way as the connective tissue it is replacing.

So here is my new thought: Even though the pudendal nerve was seen "fixed" in connective tissue does not mean entrapment. However, having the pudendal nerve "fixed" in connective tissue puts it at high risk for entrapment in scar tissue due to the fact the scar will be formed from the connective tissue cell type present around the pudendal nerve.

Looking forward to everyone's thoughts on my different conclusion.

[Violet M]

Makes sense to me, nyt. Thanks for the explanation.

It "may be one", Wow. "May" that is a very strong word. May = unclear.

If you look in a thesaurus the #1 match to the word "may" is "can." PNE can be one of the causes of PN. In other words, the article is debunking the notion that PNE is fiction and it is confirming that PNE can be one of the causes of PN.

Then when failure occurs we get into the voodoo explanation where the nerve gets mysteriously "re-entrapped" or "the nerve was too damaged in the first place". Sure, sure, that makes perfect sense.

So you are saying it's voodoo to believe a nerve can be too damaged to heal well?

What if I were to say "Mindbody a myth? Just as I suspected."

You told me exactly that multiple times on this forum.

You are making things up, Ezer. Show me where I ever even suggested mindbody is a myth. I would never would have said that because I don't believe it.

Violet

[Violet M]

RJR,
It equally pains me to see kids that had pain after a sexual encounter and that are advised on this forum to go consult with a "PN aware" doctor as soon as possible "before the nerve gets more damaged". It panics them and surely sooner or later they are thrown on the conveyor belt to surgery by the usual suspects. They need reassurance and not that PNE rubbish. I know a few of them that went down the surgery route. Sad and irresponsible.

Stop it, Ezer. You are making things up again. No one on this forum sends anyone to the conveyor belt of surgery. In fact, the opposite is true. We typically suggest and recommend people try conservative therapies first, including the mindbody approach, and discourage people from going the surgery route unless they have exhausted all of their other options and still have no quality of life. Some of the PNE surgeons I know also recommend conservative therapies first and will not always perform surgery if they don't think the person is a good candidate.

Statistics matter.

Right. And the ones you have gathered on your own are completely unscientific and do not meet the standards for accurate statistics.

Violet

[ezer]

You are making things up, Ezer. Show me where I ever even suggested mindbody is a myth. I would never would have said that because I don't believe it.

You don't believe in the mindbody approach Violet. The mindbody approach is centered around repressed emotions. That is the central tenet. You feel that it is bunk. You said multiple times that you feel surgery cured me and the mindbody approach (which you feel is like meditation --not the case BTW) maybe healed leftover central sensitization/pain pathways.

You said:

Repressed emotions is not an adequate explanation in my opinion because the repressed emotions didn't cause pain for forty years.

An explanation that would make a lot more sense to me is that if a person experienced an injury and then developed chronic pain, then possibly the brain developed some permanent pain pathway. But it wouldn't have to be due to repressed emotions. If the brain and spinal cord had developed permanent pain pathways, maybe by using the mindbody protocol that you described in your success thread viewtopic.php?f=74&t=6222 you could retrain those pathways if the nerves have indeed physically healed. I can see that as an explanation. But that is not the same as saying the pain is caused by repressed emotions.

OK, so Sarno isn't saying there never was an injury? I guess he is saying there was an injury but it should heal itself and the pain should go away. That makes more sense and if that's the case it could be that the brain and spinal cord developed a pathway of chronic pain and need to be retrained.

So what I have never understood is how you can be certain that it is mindbody that cured you and not a combination of first surgery that allowed the nerve to heal and then mindbody that allowed the brain to return to it's normal pathways instead of the pain pathways that had made semi-permanent changes to the brain.

the article is debunking the notion that PNE is fiction and it is confirming that PNE can be one of the causes of PN.

The article is not conclusive, I disagree. "May" or "Can" imply probability and uncertainty. It is not absolute.
Fact or fiction? Conclusion: unclear.
It did not say:
Fact or fiction? Conclusion: FACT.

The article says "there is no evidence to support equating the presence of this syndrome with a diagnosis of pudendal nerve entrapment". How lukewarm of an endorsement is that?

No one on this forum sends anyone to the conveyor belt of surgery

Not on this forum. It is the PN-aware doctors that do that. Yeah sure. We recommend PT that never works. Nerve blocks that never work. Then of course what is left is surgery, the ultimate cure.

Right. And the ones you have gathered on your own are completely unscientific and do not meet the standards for accurate statistics.

23 is better than 1 Violet. You clearly never took a class of probability and statistics. Oh and I forgot. Filler with his 87% rate and Dellon with 100% success rate are of course valid and accurate statistics. It is peer reviewed. Serious stuff. I am so impressed.

Is it really so helpful to have pelvic pain patients believe that they have a 87% to 100% of probability to get 50% better with PNE surgery? You can mock me all you want but the fact is, I raised a very serious question with the surgery success rate. You may not like the conclusion but you cannot deny the serious dissonance that exists. IT IS A FACT: Surgery has a low success rate.

You may not like my sarcastic tone when I mention your PNE heroes but the fact is that I am pretty bitter at those quacks that swindled me and caused me tremendous pain (I was bed ridden for a while and went on disability). You keep justifying no matter what the nonsense and contradictions they spew. You just defend them no matter what. Dellon 100% success rate: Completely believable. Filler 87% success rate: No problem. Hibner 77% success rate: Must be 100% right. Where is your common sense?

Stanford and Mayo (both absolutely TOP ranking Hospitals in US News report) stopped doing PNE surgeries because they claim it doesn't work. Why would they say that?

So you are saying it's voodoo to believe a nerve can be too damaged to heal well?

I chopped my finger Violet. It was reattached. The ultimate nerve damage. It was completely numb for a while but the nerve regrew. Yet, it is a solid block of scar tissue and the finger is very stiff. I do not experience pain and I have normal sensation. In the absence of prior surgery I indeed do not buy "the nerve is too damaged" theory. Another PNE myth.

Makes sense to me, nyt. Thanks for the explanation.

Did you even spend a few seconds on it?

It is called CONFIRMATION BIAS.

You start by the conclusion that fits your own bias and you work backward making up theories to fit.

http://www.sciencedaily.com/terms/confirmation_bias.htm

[Violet M]

Never said I thought surgery cured you, Ezer. You are making stuff up again. You found one quote where I wondered if surgery might have contributed to your healing. Seems like a reasonable question to me.
Never said mindbody is bunk. However, it doesn't have to be only about repressed emotions. I went to the top google hit on mindbody, an the article from the APA describing mindbody, and while it does mention emotions, it doesn't even have the word repressed in it. http://www.apa.org/monitor/apr02/embracing.aspx
Second top hit also doesn't have the word repressed in it's description of the mindbody approach.
http://umm.edu/health/medical/altmed/tr ... y-medicine
So no, I don't necessarily think mindbody always refers to repressed emotions. I just pointed out the obvious that in my case, if I hadn't had pelvic pain from repressed emotions for 40 years, why would I all of a sudden develop it from repressed emotions when there was clearly another cause.

I'm really sorry you suffered for so many years and happened to end up with doctors who were not able to help you. You will find 0 quotes from me that I believe Filler's and Dellon's statistics are accurate so I don't know why you keep saying that. I can understand why you would be so upset when surgery didn't seem to help you. I suffered for a long time too and surgery is what gave me back a decent life. I researched mindbody before surgery and it didn't work for me. Can't we just accept the fact that some things work for some people and other things work for other people without hurling insults and telling someone else that what cured them is a myth?

I hope some people try the mindbody approach as you recommended and I hope it works for them. But if it doesn't, and nothing else is working, I would never want the option to at least try surgery, to be taken away from them. Is that what you are advocating, Ezer?

BTW, what have Stanford and Mayo come up with that works for people with PN? I just recently had someone who had been receiving treatment at Mayo contact me for ideas on what to do next because the protocol she was receiving there wasn't working.

I'm not a scientist as nyt is so I will not even begin to discuss confirmation bias related to her theory. I will say though, that I've always wondered how the nerve piercing a ligament could suddenly turn into an entrapment because hasn't it been piercing the ligament all along? I think that Nyt's theory of a different pattern of collagen developing could explain how this might happen. Science is, after all, coming up with a theory and positing experiments to either prove or disprove the theory. Nothing wrong with coming up with a theory is there? But speaking of confirmation bias, maybe someone who wants the mindbody approach/repressed emotions to be the explanation for their pain might be able to make that theory fit into their own experience. Call it confirmation bias or whatever you want, if it works, that's a good thing isn't it?

BTW, I am really enjoying this debate. Sorry for those of you who don't like debates. The reason I like it is that it makes all of us think and maybe grow in our ideas and let go of some of our biases. That can only be a good thing. Ezer, some of the questions you have raised have caused me to reconsider some of my previous ideas and embrace new ones, although I will never be able to accept the idea that PNE is a myth because surgery is what worked for me. And no, RJR is not the only one who got better from surgery so let's not keep counting just RJR.

Violet

[RJR]

Ezer,

You asked why I considered a second surgery after the 1st. Simple, I want to go from very good to perfect. As I've stated in all post on this forum about my pain context, my deep burning neuropathic pain (read unmanageable) has been gone since the day after surgery. What remains is surface discomfort (read very manageable). Pre-surgery I could only sit for 0.5 hours per day on a special pad. Post surgery I can sit 10+ hours a day and often do not need a pad.

My right STL became scarred and deformed from long distance bicycling. The scarred tissue caused the adherence of the STL to the nerve. My surgery video shows this. Add in the before and after surgery MRIs by 2 professors from 2 renowned institutions (not affiliated with my surgery provider), who both concluded PNE present and then PNE fixed by surgery....that constitutes good enough proof for me. Having been a nuclear engineer on a submarine, I tend to look at things from a risk (averse) and logical perspective. Based on all the indicators before me, I made a decision and it was the right decision.

My biggest regret is that I did not elect surgery sooner.
rjr

[ezer]

Violet, "repressed" as in repressed emotions is just an adjective. We try to describe what are extremely difficult concepts beyond what neuroscience can tell us.

Repressed emotions could also be translated as "emotions we don't want to feel". "silenced emotions". "quelled emotions". You should not think that we are repressing emotions from some horrible event in our childhood.

Let me give you an example: A cashier at a store disrespects you. After a few seconds you get upset.

What you were doing is repressing or avoiding your emotions: Low self-esteem, being disrespected, getting exposed etc. Low self-esteem is a big one. We all have some self-esteem problems. All of us. We are not smart enough. We don't convey authority. But we really do not like to ramble within those feelings and we move on quickly.

My dad was assaulted randomly (after his car broke down) when I was a teenager and he passed away a few days later. After that, I had so much pressure to succeed, finish high school, go to college. I turned the page quickly.

Exactly a year later, I started having horrible allergies. It was unbelievable. For 2 years I had non-stop allergies.

At the time I did not make the connection but it was evident. I never mourned my dad's passing. I never felt and resolved those negative feelings. I simply repressed or quelled those emotions. But those negative emotions were dutifully recorded in my implicit memory.

Why did it take a year to surface? I don't know. What I noticed that the brain uses an event or incident to trigger symptoms. In that case, I learned from the newspaper that the pollen level was high. The same day, a neighbor told me that it must be tough to be an orphan. I was so hurt to hear the word "orphan" for some reason. I had an anxiety attack. Bingo, the allergies started.

When I was a kid growing up in Europe in the 60s, psychosomatic symptoms were very well accepted. It was a fact of life. gastrointestinal symptoms -> stress. Allergies -> stress. Migraine headaches -> stress.

But then Freud became obsolete and surprisingly enough steroid injections became popular (which for many disproved psychosomatic symptoms because steroid injections were apparently curing musculoskeletal symptoms).

I really knew that I was onto a cure when I started feeling my emotions and it would correlate with the pain vanishing. My PN pain would vanish for 5 seconds. Then it would come back. Then I would feel another emotion. The pain would go away for 10 seconds...1 minute... 20 minutes etc.

Pain and emotions are processed by the same area in the brain.


If you are interested, you should look at Dr. Bob Hanscom's book:

Back in Control: A Spine Surgeon’s Roadmap Out of Chronic Pain

http://www.drdavidhanscom.com/book/
http://www.amazon.com/Back-Control-surg ... ob+hanscom

Dr. Hanscom is an orthopedic spine surgeon who has been performing complex spine surgery since 1986. he is specialized in correcting botched spine surgeries. It was his observation that most spine surgery should never be performed.

This book is his own experience out of chronic pain:

A treatment paradigm has evolved from my personal experience as well as learning from my patients.
My goal for my patients is not just learning to live with pain or manage it. It is now becoming pain free.

Also, I have mentioned Dr. Candace Pert
https://en.wikipedia.org/wiki/Candace_Pert

Candace Pert lives in a world where emotions make scientific sense. As former Chief of Brain biochemistry at the NIH for 13 years, she studied the inner workings of the body with an eye towards identifying and locating the chemistry of emotion. In 1993, Pert appeared on Bill Moyer's landmark TV program, Healing and the Mind, where she explained her theories of emotion to a national audience. She attracted attention for being that rare scientist who can explain her work with a sense of humor and passion.

Pert: In the late seventies and eighties, I performed numerous mapping studies in the brain of both the peptides and their receptors. The receptors tended to map out in areas like the amygdala and the hippocampus that had been previously implicated as being part of the emotional circuitry. We could also map the peptides in other areas of the body, such as the immune system and the glands. At first nobody could make any sense out of this. Why would these molecules be circulated in all of these areas? What purpose might they serve? To most people who are in the Western scientific tradition of separating brain and body, this seemed counter-intuitive.

But my team realized that this system of molecules formed a communication network throughout the brain and body. It seemed consistent with my almost intuitive feelings about the biological basis of emotions. I was familiar with some of the concepts coming out of California, from Esalen to Stanford, of how health and disease, mind and body are intertwined. What we were seeing made sense to me.

I have a whole theory about this. I believe that emotion is not fully expressed until it reaches consciousness. When I speak of consciousness, I include the entire body. I believe that unexpressed emotion is in process of traveling up the neural access. By traveling, I mean coming from the periphery, up the spinal chord, up into the brain. When emotion moves up, it can be expressed. It takes a certain amount of energy from our bodies to keep the emotion unexpressed. There are inhibitory chemicals and impulses that function to keep the emotion and information down. I think unexpressed emotions are literally lodged lower in the body.

Dr. Gabor Mate (when the body says NO) that you have read:
https://en.wikipedia.org/wiki/Gabor_Mat ... physician)

Modern research is confirming the age-old wisdom that emotions are inseparable from our health and physiology. Repressed emotions bring on stress that can lead to disease.

On the psychological front, there is the founder of psychosomatic medicine, Prof. Franz Alexander
https://en.wikipedia.org/wiki/Franz_Alexander

According to Prof. F. Alexander, the development of PSD (psychosomatic disorders) requires three preconditions:

1) The patient should have a psycho–emotional upset;
2) A certain specific situation serves as a psychosomatic trigger;
3) The patient must have a constitutional mental vulnerability and a certain biological factor increasing the propensity to PSD.

I have seen that situation so many times on this forum.
1) An emotional trigger (fear of STD for some of the kids that posted on this forum for example)
2) A trigger: fall, biking, too much sitting
3) A genetic predisposition.