I was diagnosed with TOS 3 years ago from bilateral cervical ribs. In Feb '08 I had cervical and first rib resection on my right side. I was originally supposed to have the surgery on my left side after my right side healed up. The problem was that my right side never got better; it actually got worse. The doctor had mentioned to my family after the surgery that he had had to pull pretty hard on a large nerve bundle, so my guess is that the nerves were injured when he did this. I was told by another Dr. that the damage was most likely permanent if it lasted over a year. It has now been over 2 years, and there has been no improvement.

My entire surgery experience was terrible. Dr Charles Edwards II at Hawthorne Cardiothoracic did the surgery at Presbyterian hospital in Charlotte, NC. The entire staff was unfriendly. I wound up having to stay in the hospital for six days. Dr Edwards was supposed to come back after the 4th day to check me out and give me the go ahead to go home. He still hadn't showed on the 6th day, and we were finally able to get the nurse to discharge me. When I went to my follow-up appointments and told him about the pain and how it was not getting any better, he blamed it all on the narcotic medication that I had taken for the TOS pain prior to the surgery. He said it had slowed the healing process. When I asked him about the nerve bundle that he had stretched during surgery, he conveniently didn't remember that. Eventually when he got tired of seeing me, he sent me to the pain doctor and never put me in any kind of physical therapy.

I have been going to a pain doctor now for over two years. I have been working the entire time at a job where I have to type all day. I have been unable to tolerate all of the non-narcotic medications that I have tried due to the side effects, and the narcotic medications, taken at a level where they actually control the pain, make me too dopey to function. The pain doctors that I have been to have suggested a spinal cord stimulator to help with the pain, but my concern is that most people still have to take narcotics when they are on the SCS, and there are often complications from the implantation. Plus it is very expensive to even just do the trial for the SCS, and it may not even work for you.

I am at the point now where instead of treating the pain, I want to fix the issue that is causing the pain. I would love to go to a good TOS surgeon for an evaluation of my current condition, but I can hardly even find one who works with TOS, much less one who is actually good at it. Does anyone have any suggestions for a good TOS doctor in the NC/SC area?