Hi everyone!!

I have been looking at this support group for several years but have never posted. However, I've recently found a way out of the TOS nightmare, and I decided to share my story to try to help someone else.

I first started having symptoms about 6 years ago, while I was writing my PhD thesis. I had excruciating upper back pain whenever I worked on the computer. I managed to finish and got a new job as a scientist at a prestigious research lab, where I struggled through the first year with horrible pain every day. I saw 5 different specialists and was told that it was either a disk problem (seen on an MRI) or muscle strain... I went to 3 different PT clinics for 6 months to no avail. The only thing that seemed to help somewhat was deep tissue massage. Finally, I was a neurologist who gave me trigger point injections, and my pain eased up a bit.

I had a good 3 months or so, and then I suddenly started having hand pain while driving and typing. It got worse over the course of a few weeks, and I was back at the dr. This time I had nerve conduction tests (which were normal) and was checked out for a possible rheumatological condition, but my bloodwork was also normal. I found a hand therapy clinic and went there for several months, made all the ergonomic changes at work, etc, but not much helped. I was referred to Dr Jordan in Santa Monica and he diagnosed TOS. He said my scalene muscles were extremely tight and that i was a typical patient... Tall/thin with droopy shoulders/poor posture and long neck. He recommended a nerve block, which I held off on at that point. I started neuromuscular/trigger point therapy, kept doing my PT, and tried to type less, and gradually my hand pain got better/more manageable, but was still there. Then I got pregnant, and my symptoms went away miraculously while I was pregnant. They came back 3-fold afterwards, however. Back to dr jordan, and this time I did the nerve block, which was somewhat inconclusive in terms of helping my pain. However, he said that my muscles were extremely spastic and that I definitely had TOS and would benefit from botox. I shelled out $5k for botox injections and they didn't help at all.

Fast forward 6 months, and I was almost completely disabled. I could no longer type or work at the computer at all and used dictation software for whatever little I did. I was on disability leave from work. I spent most of the day lying on the floor trying to manage symptoms. I was unable to care for my son, drive, or do any type of work around the house. For almost a year I went to PT/hand rehab twice a week. I did active release technique as well (which helped a bit ... More than PT). I was scared and depressed... I figured i would have to change careers. I had endless drs appointments... Several neurologists, rheumatologists, chiropractors, physiatrists, counseling/therapy, PT, hand rehab, OT... And on and on. Sound familiar?

I spent a good chunk of each day researching this condition online. Somehow I managed to come across the work of dr John Sarno, a (retired) physician at NYU who claimed extraordinary success rates for chronic back and limb pain, including RSIs and TOS. I read more and more online, and his theories of the connection between stress and pain resonated with me... I read his books a few months ago and had the most remarkable experience of my life. Literally, within less than a week of reading his books the agonizing back pain that had been my constant companion for several years had dissapated, and within several weeks my hand pain was gone. I now type as much as I want, in whatever "bad" posture I want to, with no pain. I lift my son, drive, blow dry my hair, and basically do absolutely everything I want to with no pain. I have completely stopped all PT/massage, etc. I know this sounds too good to be true. I wouldn't believe it if it hadn't happened to me.

Basically, dr Sarno says that your brain is shunting off bloodflow to various parts of your body due to a stress response, which is causing your pain (not totally inconsistent with standard TOS theory, except that it is an emotional response, and not a mechanical problem at all!) Once you realize this you can counteract it. This tends to happen more to highly driven, perfectionistic, ambitious people who tend to repress neagtive emotions. In retrospect, it was initiated for me by the stress of graduating, starting a new job, and some marital issues. Once it starts, it can go on for years, perpetuated by fear and pain, and completely take over your life, until you realize the emotional root of the problem.

Literally thousands of people have stories like mine. People who've had pain for decades, and have been bedridden even, have made astounding recoveries. He's written several books, spoken to congress and been on 20/20. **