Health Organization for Pudendal Education

Hi,

I have also been a patient in London in the early days of this condition. I would like to raise some discrepancies in the treatments not recommended.

When I was seeing Dr B. There was a surgeon in London who was performing decompression surgery, a colleague of Dr B.s


Dr B. Was then referring people on to this surgeon who has since retired. About this time Dr B. Seems to have started advising against surgery, does anybody find this odd.

The pain team also had physics on board, who were against manual therapy, what I would have liked to ask is why then were they there at all?,

Dr B was for a long time referring people privately to Ruth Lovegrove, as to the best of my knowledge it was the physics themselves who would not embrace hands on treatment, again what were they being paid for?



I realise surgery has a poor result record when con pared to many other surgeries, but even if it helps only a few people, this is better than none, the same applies to physiotherapy.

Of all the years I have been fighting this, by far the worst period was the ten months I was going to London. Dr B. Performed four nerve blocks every time making the pain worse and winding up the muscle spasm and one neuromodulation. By the time I was finished mentally and physically I was as low as I could get. I found The London experience bleak and it gave me no hope. Hopefully things are better there than they were. If I had my time again I would go to France.


Regards to everyone fighting this ghastly condition,

Molly

Molly, I think you make some good points. What worries me most about surgery is that not only does it not help many people, but for some it actually makes the pain and daily life permanently worse. There are some worrying accounts on these boards. The mind/body method explained by Ezer is safe and free .

Alan, so what does NHNN recommend?

Violet

I work full time so I admit hadn't really read a lot of the posts in this thread very well -- just skimmed over them. But today I had some time to re-read what everyone is saying and I also looked at Dellon and Filler's articles. I think nyt gave an excellent summary of the articles. However, I do agree with Ezer that the results on the forum don't match up with published results.

I took some time this afternoon to re-read Ezer's mindbody thread and look at some of the resources he posted. I watched the you-tube video Ezer posted that says Sarno cured 70% of his patients. With such great success rates, why isn't his approach becoming wildly successful on a widespread basis?

I am intrigued by the mindbody approach because I think there is definitely a connection between the mind and the body but one thing I have never been able to figure out is when someone who has been pain-free suddenly has an incident/injury (accident or surgery, etc.) in which pain arises, how can the pain then be attributed to being psychological and due to repressed negative emotions?

Violet

Violet M wrote:I work full time so I admit hadn't really read a lot of the posts in this thread very well -- just skimmed over them. But today I had some time to re-read what everyone is saying and I also looked at Dellon and Filler's articles. I think nyt gave an excellent summary of the articles. However, I do agree with Ezer that the results on the forum don't match up with published results.

I took some time this afternoon to re-read Ezer's mindbody thread and look at some of the resources he posted. I watched the you-tube video Ezer posted that says Sarno cured 70% of his patients. With such great success rates, why isn't his approach becoming wildly successful on a widespread basis?

I am intrigued by the mindbody approach because I think there is definitely a connection between the mind and the body but one thing I have never been able to figure out is when someone who has been pain-free suddenly has an incident/injury (accident or surgery, etc.) in which pain arises, how can the pain then be attributed to being psychological and due to repressed negative emotions?

Violet

Violet, I'm not an expert on John Sarno's ideas, but have read a few of his books this year. From memory and without looking up particular quotes, I think he says that most people cannot accept that their pain is psychosomatic and often become angry that the idea has been suggested. He says that because people can't accept the notion, they can't make even the first step towards ending their pain. That's why it isn't "wildly successful".
Also, I think that for some people, more needs to be done than just realising and understanding that their pain is psychosomatic , driven by subconsious emotions , and , as Ezer says, they need to experience their own emotions , which is not as easy as it might sound. I think that experiencing emotions can take a lot of work, over time.
About your last question, I think John Sarno says that the initial incident or injury is a trigger for rather than the cause of chronic pain.
I've found the quote:
"The idea that physical incidents are triggers is reinforced by the fact that there is no way to distinguish between those pains that start gradually and those that begin dramatically in terms of subsequent severity or longevity of the attack. All of this makes perfect sense when one considers the nature of TMS. Despite the perception of injury, patients are not injured. The physical occurrence has given the brain the opportunity to begin an attack of TMS."


Sarno, John E. (2001-03-15). Healing Back Pain: The Mind-Body Connection (Kindle Location 288). Grand Central Publishing. Kindle Edition.

These may sound like weird and implausible ideas, but then when someone has tried all or most of the conventional medical treatments, tried accupuncture, herbalism, chiropractors, etc , what is there to lose? Surely, it's at least worth thinking about and not dismissing entirely.

I'm not a particular advocate of the National Hospital for Neurology in London but I know they offer pulsed radiofrequency , which does help some people (not me though) and some people get spinal implants for pain there. On the pain management course they openly admitted that what they could do for pain was limited but they tried to help us to cope better with it.

i would like to know the effectiveness of surgical results broken down by presumed etiology. For example, has surgery been most effective for those who experienced a specific acute event, like waking up from a hysterectomy with the pain? Has surgery never worked for those whose pain started after a fall ?

Solarmom, that would be an interesting study for sure. When I think back to the people I've known who had successful and unsuccessful surgeries, I don't see any trend with successful PNE surgery for one type of presumed etiology over another.

Alan, I agree with you that the mindbody approach is worth a try if you can figure out how to do it. I read one of Sarno's books before surgery but I could not wrap my mind around where to even begin trying it because Sarno was discussing things like bringing up your past history of child abuse, etc. There wasn't any abuse in my past and I just couldn't relate to it at all. His statement that "despite the perception of injury, patients are not injured" makes you wonder if he thinks anyone can ever be injured. If so, how does he know when someone is injured or whether it is psychosomatic?

Violet

Violet M wrote: His statement that "despite the perception of injury, patients are not injured" makes you wonder if he thinks anyone can ever be injured. If so, how does he know when someone is injured or whether it is psychosomatic?

Violet

He does deal with that point in the next paragraph to the one I quoted:
"There is another reason to doubt the role of injury in these attacks of back pain. One of the most powerful systems that has evolved over the millions of years of life on this planet is the biologic capacity for healing, for restoration. Our body parts tend to heal very quickly when they are injured. Even the largest bone in the body, the femur , only takes six weeks to heal. And during that process there is pain for only a very short time. It is illogical to think that an injury that occurred two months ago might still be causing pain, not to mention one of two or ten years ago."

Sarno, John E. (2001-03-15). Healing Back Pain: The Mind-Body Connection (Kindle Locations 288-292). Grand Central Publishing. Kindle Edition.

A while ago I saw a TV documentary about this man : http://www.bbc.co.uk/news/health-29645760 and wondered why, when the gap in his spinal nerve was partly repaired, he didn't suffer any pain.

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. In that sense I could see how the mindbody approach could work in retraining the brain but maybe other forms of meditation such as mindfulness or prayer could too.

Violet

Don't take Sarno too literally. I don't agree with everything he says.
Sarno is 91 years old. He began developing his ideas in the 1970s.

The founder of psychosomatic medicine was Franz Alexander (1891-1964), a Freud disciple, that formulated theories around the repression of anger.
http://www.ncbi.nlm.nih.gov/pubmed/20527085
Sarno was directly inspired by Dr. Franz Alexander.

Neurology did not offer a lot in the 1970s. Sarno did not bother attempting to explain his approach with neuroscience, but used instead the psychological language of the period (Freud and also Lacan). He worked with a Freudian psychologist and colleague, Dr. Stanley Cohen.
If he were to begin his career now he would most certainly offer a more contemporary neuroscience based explanation. See Dr. Robert Scaer's books for neuroscience based explanations of chronic pain/trauma.

John Stossel is a big fan:
https://youtu.be/vsR4wydiIBI

Abraham Low, Peter Levine, Robert Scaer, Alan Schore, Arthur Janov, Joseph Chilton Pearce, David Grand, Ellie Van Winkle, Bessel van der Kolk, Pia Mellody, Pat Ogden, Bernice Andrews, Robert Sapolsky, Candace Pert are some of the people that developed similar ideas. Some of them are psychologists, others neuroscientists.

I personally doubt Sarno's 70% success rate --I am sure there were relapses or people that developed different mindbody syndromes. To me the cognitive aspect of Sarno is not sufficient to heal durably (I did not post the video because of the reference to Sarno, I posted the video for Dr. Robins' (a urologist) explanation of how he was affected himself by a mindbody syndrome which I found enlightening).

While I doubt the 70% success rate, I do believe that the success rate was higher than today. The claimed success rate was in the pre-internet days when Dr.Sarno at the RUSK institute at NYU was hand picking himself candidates for his treatment very thoroughly. It was never a random group of people "trying Sarno".
In addition being before the Internet, people did not search medical terms all day long. You can search for "Sarno scam" or "Sarno success" and get whatever fits your bias (or of course PNE surgery scam/cure). We keep instilling doubts with all that searching.
At the end, they had Sarno's lecture at NYU and the Merck medical dictionary (maybe) in their bookcase. That was their only reference. Not much medical distraction.

I really did not mention Sarno very much in my prior posts. In fact I did not follow his methodology for long because it did not work for me.

Regardless his book "Healing back pain" is dated but a good introduction to mindbody medicine.

Regarding meditation being as efficacious as emotional work, it is pretty much a given that it is not the case.
Meditation does help manage pain but does not resolve it.
For faith based healing, I really cannot judge. I have not been blessed with a strong faith which I sincerely regret. It would certainly have helped me in difficult times.

No matter how you look at it our emotions are central to self maintained chronic pain (whether or not there was a prior physical injury or severe childhood trauma):

I won't go over the implicit memory and the fight/flight mode again. Let me simply quote a few scientists that have studied the subject.

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.
Dr. Gabor Mate (when the body says NO)

Mindbody syndromes are caused by repressed emotions.
Dr. John Sarno (healing back pain)

When someone we love dies, or when we are injured or violated, we may act as though nothing has happened, because the emotions that come with truly acknowledging the situation are too painful. In addition, dissociation may be experienced as part of the body being disconnected or almost absent.
Frequently, chronic pain represents a part of the body that has been dissociated.
Dr. Peter Levine (waking the tiger)

"I’ve come to believe that virtually all illness, if not psychosomatic in foundation, has a definite psychosomatic component. Emotions and bodily sensations are intricately intertwined in a bidirectional network in which each can alter the other. Usually this process takes place at an unconscious level, but it can also surface into consciousness under certain conditions, or be brought into consciousness by intention"
Dr. Candace Pert (molecules of emotion)

Not from scientists but very insightful:

Learning how to process emotions (past and present) in a healthy way is the crux of effective Mind Body Healing.
Things like yoga, relaxation, and meditation can help, but they will usually not be effective long term on their own – unless they are combined with skills that help you to feel and process your emotions.
Lorraine Faendrich, pelvic pain - mindbody coach

If you cannot feel your emotions, if you are cut off from them, you will eventually experience them on a purely physical level, as a physical problem or symptom.
Eckhart Tolle (power of now)

If you want more information. Please listen to this psychologist that suffered 18 years from pelvic pain. It is a fascinating interview:

http://shrinkrapradio.com/341-the-hidde ... xanderphd/

His own web site is full of free resources.
http://www.drjamesalexander-psychologist.com/

@bikelover: feeling your emotions is not the same as thinking about your pain.