I have winged scapula, significantly lower right shoulder and significant muscle atrophy of the upper and lower trapezius. I had TOS surgery that somehow gave me very brief relief (2 months) but have had serious problems since. I had a second surgery 15 months later to remove scar tissue that had no impact. About a year after that surgery I took another dive in the wrong direction.

I am now seriously doubting that my problems are TOS. My rationale is I do not have and never had any arm problems which seem to be present in all cases of true TOS. My symptoms are also aggravated more by neck movements (especially looking down) than use of my right arm/shoulder.

Based on what I have learned myself (don't we all become internet research doctors when we have suffered for years) I believe I have some sort of nerve damage/entrapment/lesion/something with my spinal accessory nerve. It innervates the traps and that is where I have pain and atrophy. I have had several nerve tests over the last 10 years and I do not have a lot of confidence in them as I get a different result each time. I have shown abnormal suprascapular nerve, then normal, then abnormal long thoracic and dorsal scapular in the three tests I took from 2009 - 2013.

My next step is to try and get somewhere that can do a more thorough and exhaustive evaluation. I am not sure where that is and I am open to suggestion if anyone has knowledge to share. I have doctors that will gladly refer me as they admit it is outside their area of expertise. IMO that is the biggest problem for a lot of us. Doctors seems to have a narrow space or niche that they do - even the prestigious ones. Also the more prestigious the bigger the ego and the more they are concerned about being right. I'm sure there are exceptions to this but I have seen several and that is my take.