Michele576, if you are still here. . .
Look up what is called "Parsonage Turner Syndrome". It goes by many names, the one I prefer is "Neuralgic Amyothrophy". This is one of the more common causes for a fairly rare condition that leads to scapular winging and weakness. There is also a type of muscular dystrophy that can cause winging, but it usually would have started when you were much younger and there are other more obvious signs that a good doctor would not miss.
I have Neuralgic Amyothrophy. I have fairly sever weakness in both arms, pain particularly on my right shoulder that crosses over to my left and leaves me with left sided headaches. I have TOS on my right side that probably is caused by the fact that my right scapula has drooped from lack of muscular support due to long thoracic nerve damage. This can also impact other nerve plexus areas.
I have had problems with my arm not being the right temperature- I mean not a consistent temperature from one place to another. This was seen under an infrared camera as a nice mosaic of colors instead of a uniform warmth.
It is hard to imagine your doctors would not see this, but then again, I had to point it out to my own doctors. Even then they thought I was nuts. How dare someone diagnose themselves on the internet?
Google "scapular winging causes".
What actually causes it? There are many theories. Some types of injections can cause it. Certain types of virus are suspected. It could be an autoimmune disease. It could have a genetic factor too.
I hope you find an answer, if you have not already gotten it.
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Originally Posted by michele576
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
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