Originally Posted by romans8

I have been dealing with this for years and unfortunately have been misdiagnosed leading to unnecessary shoulder and cervical surgeries. A lot of doctors look at my surgery background and try to steer me towards pain management. It's almost like they are saying you have had too many chances. As far as tests I have had about everything you can think of. I am assured my spine is clear. Nerve tests have all been negative until the last one which showed abnormal long thoracic and dorsal scapular nerves which originate from the area compressed by thoracic outlet. I have terrible scapular pain and a lot of muscle wasting on the right trap and neck. My right shoulder is significantly lower than the left.

Everything was pointing to TOS until the Botox did not work. My doctor is now hesitant as I think he does not want to operate with this being negative in the history. I really do not think he has seen severe cases like mine and I am thinking about going somewhere else. The first doctor to diagnose me positive was Atasoy in Kentucky. However he is 80+ years old and retiring in a few months. I want to find out who are the top TOS doctors nationally and go to one of them. If anyone would give me some names I would greatly appreciate. I have heard of Ahn in California and the doctor at Johns Hopkins. Gettin in to some of these docs is probably difficult.