Hi Beth, and welcome! Sorry for what you're going through, though!

Most of my pain is just as you describe, over the collarbone, side of neck, shoulder blade, and traps...I get a lot of swelling over my collarbone in the area of the brachial plexus. My collarbone is unstable, which contributes...my TOS was from an auto accident, with neck/shoulder trauma. I rarely have hand pain, although I do have constant numbness in my hand, which gets worse the more I use my arm/hand. Fine motor with that hand is really difficult. Don't have much elbow pain...some burning there and spasms at times...but do have the pain under my arm, sometimes pretty intense.

I don't have a lot of the chest pain as you describe, but occasionally some. I've heard of others here who do, though.

I've also found that Physical Medicine and Rehab docs (PM&R) seem to be pretty knowledgeable about TOS...I've seen three, so far, and they all knew exactly what to look for and all agreed with TOS dx.

Hope you find someone who can understand and help you! Again, welcome to the forums...you will find a wealth of knowledge here, as well as friends who can relate!

Take care,
Donna