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Purplehaggis
New Zealand
2 Posts |
 Posted - 06/10/2010 : 18:37:41
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Hello everyone
I'm new to the forum and am familiar with John Sarno's work via a relative who identified that she had TMS.
My background is as follows:
Extremely healthy until approx. 5yrs ago when I began experiencing pressurised, whooshing headaches and was diagnosed after MRI and Neurology assessment as having a Type 1 Arnold Chiari Malformation and later had decompression surgery, complicated by developing hydrocephalus post operatively and needed High Dependency Care in hospital for several weeks. One year post op and I have taken myself off all opiods prescribed. Headaches have returned, but MRI shows everything is now stable.
In the interim, I have also been experiencing swelling in the hands and feet, skin problems and various other symptoms, which have pointed in the direction of SLE (Systemic Lupus), supported by diagnostic testing including ANA.
I am a strong beleiver in mindbody medicine and am particularly interested in John Sarno's approach.
My problem is this - medical professionals tell me that I have an auto-immune disorder, clinically significant (and potentially serious if not treated), and that my headaches are most likely to relate to post-op hydrocephalus (now resolved)and longer term consequences of this.
I, on the other hand, am inclined towards the mindbody concepts and want to progress work based on John Sarno's work.
I feel somewhat in conflict, not knowing to what extend I may be affected by TMS and to what degree I can engage in the recovery process and expect a full recovery.
I guess I'm feeling a little uncertain about placing all emphasis and efforts on the mindbody approach, if there are issues not related to TMS? And unsure about how to approach the whole situation. I guess I'm feeling that I don't have the certainty about my symptoms and likelihood of them being purely TMS related - although I know that I do have some of the other TMS related issues which I am happy to focus my attention on in terms of working things out from the John Sarno perspective.
I know that there are some practitioners in the states who specialise in coaching/counselling from a TMS perspective, but I am in New Zealand and have not been able to identify anyone with such an approach/background here.
Does anyone have experience of accessing an online/telephone TMS counselling service or have any recommendations?
Your input and advice would be very much appreciated!
Lorna |
Edited by - Purplehaggis on 06/10/2010 18:41:20 |
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Peg
USA
284 Posts |
Posted - 06/14/2010 : 20:52:41
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Hi Lorna,
Your situation is indeed tricky, since you have been diagnosed with a structural abnormality and a potentially serious autoimmune disorder (SLE). I suspect that is why you have not recieved any replies as yet. While research has shown that emotions do affect our immune function, you of course would not want to leave a serious one untreated if there are possibilities of significant complications. We are not able to give medical advice via a forum, but I wanted to try to address some of your concerns, at least from a TMS perspective.
I agree with you that trying to apply Dr. Sarno's approach could be helpful to you. One problem I see though is that as long as we believe our pain or other symptoms are due to a physical disorder and not psychosomatic, it is very hard to achieve symptom relief. If Dr. Sarno is correct in theorizing that as long as the mind believes there is something physical that is causing our symptoms, then they usually remain.
I think the lack of responses is because most TMSrs have not had your conditions. However, I recently met up with a woman who has an amazing, inspiring story of recovery and she has been diagnosed with Arnold Chiari 1. I asked her if she thought she could reply to your post and she attempted, but was unsuccessful due to some technical glitches that she will need to work out. She sent me an e-mail with a response for you. I hope it will be of some help. She writes:
"Extremely healthy as well except for constant migraines 3-4 times a week. Diagnosed with Arnold Chiari I and Syringomyelia. I had the decompression surgery with no shunt added, followed by months of rehabilitation with migraines that resolved for a month and then returned back to 3-4 times a week. I did not develop any hydrocephalus post surgical. I also had swelling in the hands but not my feet following the surgery which lasted for 10 years and had to wear a glove on my right hand because of the swelling and tingling were so painful.
I do not have any symptoms of Lupus.
I am not sure if you are saying the Arnold Chiari or the Lupus is an autoimmune disorder, I have never been told the Arnold Chiari is though. In any case this all lasted 15 years until I found Dr. Sarno's book and I decided to try his perspective as nothing else was working for me and I tried everything you can think of. I never had any back pain, but had multiple other problems following the surgery. I have to tell you, since applying the TMS information to my life, my headaches have decreased significantly and I no longer have the swelling in my hands.
I guess I am one of those people who tried the book out of desperation. I have to tell you, I follow the book and for the first time I am getting better. I now feel that if the surgery was supposed to correct the problem and it didn't (except for 1 month-- placebo) that for me it could not have been the problem in the first place. I feel I always had TMS pain and it was blamed on the Arnold Chiari malformation erroneously. By the way, I know several other people who had the surgery and the headaches resolved only for them now to have neck pain or back pain (possible symptom imperative per Sarno).
I would like to say that for me personally I felt I had nothing to lose by trying Sarno. I have also seen two TMS doctors recently and they feel that the Arnold Chiari is not causing the pain. To be fair I also saw a new neurologist and my old neurologist who said it was the Arnold Chiari-- but I am choosing Sarno."
Lorna-there is also another web site called the TMS Wiki. It has lots of TMs information on it, a discussion forum and is a hub of TMS activism. All of the information is free, created to help educate people about this effective mind body approach to healing. I am a member and my profile has my recovery story:
http://tmswiki.wetpaint.com/account/Peghanson
The woman who responded to your post has her story on the wiki as well. Her member name is Salve. Her story can be found here:
http://tmswiki.wetpaint.com/account/Salve
I'm sorry that you are suffering and I hope you are able to have some success using a mind body approach.
Best,
Peg
In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual. Galileo Galilei |
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Peg
USA
284 Posts |
Posted - 06/14/2010 : 21:05:16
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Hi again,
I had another thought. After finding Dr. Sarno's work 10 years ago, I read many other books on the same subject and one of the books might be of interest to you. It is called Anatomy of an Illness and was written by Norman Cousins. It's an older book, maybe from the 1960's. The author was diagnosed with an incurable condition, Rheumatoid Arthritis. The medical community did not have much to offer aside from symptom relief, so with his doctors help, he devised his own treatment plan, involving high doses of vitamin C (intravenously) and humor therapy. He watched funny movies and read funny books. He found that 10 minutes of belly laughter provided him with 2 hours of pain relief, without medications. He continued with his treatment approach for months (I believe). He eventually recovered and wrote the book, hoping that the medical community would see the link between emotions and healing. I think they took note of it initially, but then forgot about it.
I found his story very inspiring. It was one of the books that helped to convince me of the incredible mind body connection (along with Sarno's of course).
Take care.
Peg
In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual. Galileo Galilei |
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walnut864
94 Posts |
Posted - 06/14/2010 : 21:54:23
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I would suggest www.unlearnyourpain.com you can take an online course created by Dr howard schubiner. He has a private forum for those who enroll in the 4 week course. You can email him directly and he is great!. You can buy his book called unlearn your pain and it comes with a cd. His course worked wonders for me when nothing else in the medical community did.
I still have symptom imperative and stuff comes back but I dont always put in the work like I should to better understand why these symptoms arose. Noone to blame but myself. I suggest you buy the book and try it out. Its the same as his online course except for there is no videos to watch. Best of luck! |
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Purplehaggis
New Zealand
2 Posts |
Posted - 06/15/2010 : 14:41:22
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Thank you all for your comments, suggestions and kindness.
The Arnold Chiari Malformation and Lupus (SLE) are entirely unrelated (someone asked if I had said that ACM was auto-immune - which it isn't - but Lupus is). Also, my swelling in the hands and feet are related to the Lupus and not ACM.
It's quite confusing as I get that we need to accept the TMS diagnosis and this is pivotal in the healing process.
As my headaches are deemed to be related to post-meningitis and hydrocephalus and the other symptoms are related to Lupus, I'm not sure how to proceed with the mindbody approaches.
I'm aware of Norman Cousins and I also practice mindfulness practices as part of my day to day, and am well versed in clinical hypnotherapy, guided imagery etc.
I guess, I'm still grappling the TMS and how this might be affecting me - or whether my symptoms are entirely due to the medical stuff. I know that I can have an enormous influence on my symptoms from a mindbody perspective and this is what I practice every day.
I'm loathed to sign onto a cost based programme unless I am sure that I will benefit - if it's not an approach that will bring me any better benefits that those I use already.
I've been doing alot of research, yet for me in NZ, there seems to be a real lack of TMS specialists I can talk to and I'm unsure as to how to proceed, in terms of identifying what I can focus on.
I will do some more research and see where that leads me.
Thanks again for your input everyone, it's helped.
Lorna |
Edited by - Purplehaggis on 06/15/2010 14:43:00 |
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Arnold Chiari Malformation and Lupus (SLE)
