I was recently diagnosed as neurogenic but have had symptoms for over 7 years. Nerve tests have been negative until most recent shows abnormal long thoracic and dorsal scapular. I have burning pain under the scapula and also pain on the side of the neck and shoulder. I have significant muscle atrophy in the trap and side of neck. My shoulder drops from spasms and sets off severe pain. Recently it has started messing with my throat causing me to choke and altering my voice. The arm does not hurt but gets tingly and weak at times. I wake up multiple times during the night with half of both hands asleep and tingling. This seems to happen when my hands are moved up across my chest. I have developed left side neck spasms and shoulder/arm pain in the last 6 months. They say this could be compensation stuff but I think I have developed TOS on that side as well. All of this is likely a result of a bad whiplash injury a long time ago.

Sorry for all the detail but I am really hanging on right now. I cannot survive another misdiagnosed surgery but cannot survive doing nothing either. The doctor I am seeing was trained by the Johns Hopkins doctor and seems to know this area. He feels like surgery is my only hope and gives me 75 - 80% chance of significant positive result but is concerned about all the previous surgeries. He was not real high on the botox option but I asked for it. Maybe he had good reason that I will learn about next week. I am likely going to go with the rib resection and scalenotomy surgery unless I learn something to steer me otherwise.