Publication Abstract - A Must Read!

[Violet M]

RJR, I think you are more brave than I would be when it comes to considering a 2nd surgery. My pain was initially worse for at least a month after surgery although eventually things calmed down. You are one of the lucky ones to have had the pain go down so quickly. Glad to hear you are still doing so well.

Ezer, that is very sad about what happened to your dad. It must have been extremely difficult for you at a young age. I do prefer your description of repressed emotions to what I read about in Dr. Sarno's book and I recall that you did not completely agree with Dr. Sarno on all points so I appreciate your explanation. I have actually gone thoroughly over some of your previous posts on mindbody and gone to many of the links you posted. If I was still in a lot of pain I think it is something I would pursue more actively but at this point I don't really need to. But when I get a chance, just out of curiosity, I will have a closer look at what you just posted. Thanks for taking the time to post it.

Sorry nyt that we have sort of hijacked your thread.

Violet

[ezer]

rjr, thanks and I am very glad you are better.
I am also an engineer and I did my homework I thought before embarking on the surgery route. I was diagnosed by no less than 5 PN doctors.
My PNMLT, 3T MRI, and MRN all pointed to PNE... yet it was a resounding disaster.

Violet, indeed. When you read up to date literature on psychogenic disorders, Sarno is never mentioned. His folksy ways and slightly infantile theories such as "pain as a protection", "knowledge penicillin" were not necessary at all and make him not very credible. It is a shame.

Everything you need to know was in the seminal work of Prof. Franz Alexander: "Psychosomatic Medicine: Its Principles and Applications (1950)"

[cpps-admin]

NYT, interesting theory, but let's see the whole paper first. I've applied to get it, and I'll share it here if possible.

You asked why I considered a second surgery after the 1st. Simple, I want to go from very good to perfect... 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.

So you can sit ~10 hrs a day now, but often still need a special pad? I too had perineal pain and could not sit, but now I can sit for 24/7 if necessary and never need a pad. No surgery.

The only thing that makes me think you may have had PNE is the immediate effect it had. Surgeons say that if a nerve is entrapped, the effect of surgery should be immediate, and if there is no immediate effect, then entrapment is very unlikely. On the other hand, I've had several members of my forum report an amazing improvement in symptoms post-surgery when the surgery was for other reasons (eg appendix etc). The anesthetic seems to have some effect on pain in the short term (weeks to a few months were reported). One suspicion I have is that ketamine and related drugs, which are often used in anesthesia, are pain suppressive (studies back this up, eg Ketamine for chronic pain: risks and benefits)

[nyt]

cpps-admin, just look into copyright before posting the paper. Since the paper is not open access on NCBI you will probably have to get permission to post the paper on the forum. If you cannot post the paper any insights in to what they have to say especially in the discussion section of the paper will be interesting.

[RJR]

ezer,
You did do due diligence in your approach to surgery. I am sorry that you had endured such pain, but am glad that you now are so much better. My wife suffers from a benign nerve tumor condition that has no cure, but has great pain - I will look into your approach.

Since we have been talking about surgery, I want to say that my surgeon never pushed it...in fact it was quite the opposite. After 1.5 years under his pre-surgery conservative care, it was only after a failed pain pump insertion due to the scar tissue...that he finally allowed it as a next step. And even then he made no promises.
rjr

[Alan1646]

Something I don't understand in this debate: if , as Ezer says , a nerve that is severed can regenerate without pain, ( and this is something I've experienced myself)" the ultimate nerve damage" where does that leave the concept of nerve damage causing pain? If someone who is "entrapped" has nerve damage which causes pain, why should decompression surgery make any difference? Is the alleged "entrapment" somehow stopping the nerve from regenerating? John Sarno says that pressure on a nerve causes numbness, not pain. Does some kind of nerve damage cause pain and other kinds not cause pain? And if nerve damage causes pain, why isn't the pain felt all of the time? Just wondering.

[ezer]

What I find incomprehensible with the "entrapment" hypothesis is:

- People that wake up pain free or close to pain free every day and it is down hill from there. How can a damaged nerve regenerate daily during sleep?

- People that travel somewhere and that mysteriously experience low pain.

I remember that patient that was pain free when going to death valley. Another member that was pain free when she went to see Hibner for consultation. Low humidity?? Please.
A third member that was pain free when going to see her parents in Ireland. High humidity this time??

If the nerve is truly damaged there is no change in humidity, temperature or pressure that will make a difference. A psycho-physiological condition offers a very plausible explanation of all these situations.

[Violet M]

During the worst of PN, my pain was pretty much 24/7 unless I could get to sleep for a few hours. It was somewhat dependent on position and activity levels. Traveling made it worse. My understanding is that for many people with entrapment the pain is somewhat dependent on position with sitting being the worst. I do remember several forum members mentioning temperature as a factor but I don't know if they had an entrapment or just neuralgia. Weather didn't change my pain levels at all.

I wouldn't expect the nerve to regenerate completely during sleep but maybe it's kind of like tying a rubber band around your wrist. Your hand/wrist would get uncomfortable after awhile but if you took the rubber band off, then the pain would subside. If you put it back on, the discomfort would return. I can see how the nerve being compressed in certain positions could be similar -- or maybe irritated with certain activities. A rubber band is definitely not the exact same mechanism as nerve pain but I think you can get the idea of what I'm saying.

I think you are right though Ezer, that there can also be a psycho-physiological component with some people. I don't think you can ever completely separate pain from emotions but the question arises as to whether the pain is causing the emotions or the emotions are causing the pain, or if there is a bit of both going on and the percentage of each is probably different in everyone.

Alan, regarding nerve pain, I think the type of pain can vary, depending on which nerve fibers are affected. Also, I think it is dependent on the extent of damage. For instance, I went through stages in my PN journey when the pain was initially mild and more of an itchy feeling. This was at the beginning before the pain become severe and then again towards the end of the healing process.

Here's an interesting thread where lots of people describe having pain from nerve damage. http://www.healthcentral.com/chronic-pa ... ve-damage/

The mechanism of pain is really a complex topic. For an excellent scientific article on the subject you might want to check out this link:

http://www.ncbi.nlm.nih.gov/books/NBK32659/

Violet

[sage721]

This is all muscle spasms causing irritated nerves to send pain signals to the brain. For the vast majority, the PNE theory doesn't apply. Only if your are damaged in result of pelvic surgery. My friend was in a car accident. Needed immediate spinal surgery. The surgeon pinched/damaged the pudendal nerve during surgery. Now, he can't tell when he needs to go to the bathroom. Urination and especially defication.
However, he feels no pain, just numbness. So, Sarno may be right. A damaged nerve causes numbness not pain. However, irritated nerves cause burning. Burning is the tell tale sign of irritated nerves. Just like if you have muscle spasms in your neck that cause nerves to become irritated and produce burning sensations. This is why the surgery has very low success rates. The pudendal nerve doesn't become magically entrapped mid life. The human body would be a reck if our nerves behaved this way. Emotional/Pscyhological conditons create muscle spasms in the pelvis. The pelvis is a cradle for emotions. Since there are so many muscles in the pelvis, the domino effect takes place and the viscious cycle begins. It is difficult to undue. Sitting creates further pain because we are simply sitting on sore, irritated muscles and nerves. If your back, hand, neck, leg is experiencing pain from muscle spasms, putting pressure on the area would heighten pain levels as well. It is very simple yet so complicated because it is in the pelvis.

[ezer]

Violet, when I had my finger sectioned, the pain was also 24/7 and would be terrible all night long. But my pelvic pain would vanish during the night and did not interfere with sleep.

For many PPD doctors, disturbed sleep is a clear sign and a way to distinguish between pain due to tissue damage and psycho physiological syndromes.

The patients that posted about Death Valley and seeing Hibner were prolific posters on this board. The Death Valley patient also claimed that flying was making her pain free. She attributed the Death Valley and flying phenomena to high pressure. Of course, it is not correct: while you have higher pressure in Death Valley, you experience very low pressure when flying.