This is my first time finally searching out others with my problem. I have TOS with who knows what else! Thank God I found you, because I thought I was going crazy! I have so many questions and nobody to really ask. Please help!
I had anterior disc fusion to c4-c6 two years ago. Prior to that, I had the beginning of TOS, they think, in my right arm. Nobody would listen to me when I said I had pain in my left scapula when I leaned back. Nobody ever listened. They just said they didn't know what that was from--including my neurologist. Now, after one year of different treatments by a neurologist, physical therapist and massage therapist, including exercises, scalene nerve/brachial plexus nerve blocks to both left and right scalenes, emg/ncs times two, MRI's, etc, my neurologist wants to try botox injections to the scalenes since these injections originally took my symptoms almost away on the left side. Has anyone heard of this? My surgeon wants to do another MRI since my left arm has tingling, numbness and pain as well as the neck pain to see what is going on, if anything, in my neck again. But it's like I have to suggest things myself to the neuro, who is supposed to be the best!! My PT is great. She researches for me and gave me info on Peter Edgelow and his mini kit. Should I be seeing a different doctor, like maybe a vascular surgeon, and not a neurologist? If I have neck pain; severe shoulder blade pain when leaning with scapular winging; extreme fatigue in both arms, left arm positional coldness; left arm and hand burning, tingling and numbness; and the nerve block took the symptoms almost away, is this just TOS or TOS and something else? Does anyone experience the scapular problems too? Can my neck pain and arm symptoms be another neck problem or from the TOS or both? It seems to be getting worse, not better. Please help!!!!!!!!!!! Thanks so much! I would so appreciate any answers that will help. Michele