Kelly,
Given that I can use and raise my arm he feels the motor nerves are not as affected as the sympathetic nerve fibers which are the ones that transmit pain according to him. I do not have fibro. All of my problems are isolated to an area the size of a football in the lower neck, shoulder and scapula. I do not understand RSD so I can't say if it's this. All I know is I carried this condition in this area for almost 10 years with it getting worse and worse over time. I had TOS surgery within a year of first being diagnosed with or ever hearing about TOS. It gave significant, immediate relief that none of the spine or shoulder surgeries gave me. This wonderful time did not last but a few months before pain started back in the neck and crept back to the shoulder and scapula within a year post-op. I understand this is not uncommon.

I was supposed to go back to Dr. Pearl a couple of weeks ago but my flight was cancelled and I had to postpone until January. I have not been back to see him since the surgery and do not really put much faith into what any of the local doctors tell me as they do not understand TOS. I expect to be told I have scarred as my post-op report from the original surgery said I had a lot of scarring and fibrous bands requiring neurolysis in addition to the rib and scalene removal. I think the rib removal gave me great benefit but the scalene removal has not set well with my body. My scapula and shoulder pains are not as intense as before the surgery and I could live with those. However the surgery tore my neck up and I have extremely limited range of motion to one side. It feels like soft tissue has reattached and is strangling a nerve or group of nerves. I hurt to the touch everywhere in the concave area above the collar bone, across the top of my trap and where my scalenes use to be. So the bottom line is the surgery gave me partial improvement in the shoulder and scapula but significant worsening of the right side of neck.

What is also interesting is I had a frozen shoulder on my left side going into the surgery with some milder TOS symptoms. Physical therapy has cleared all this up and my left side only gives me minimal problems now whereas I expected to be facing TOS surgery on that side.

A lifelong battle. Have to focus on what is good in life and what will be very good when this life is over.