Hi, Jen! Welcome to the TOS board! I see you're in Aurora...I live in Weld County. Small world!

Have you ever had your neck looked at? I have TOS, and also had a fusion done a few months ago on my neck for disc problems. I notice the TOS-related neck pain is more in the scalene area on the side of my neck, whereas the neck pain before my surgery was all the way across the back, with some really bad headaches that worked the way up into the back of my head. I did have a lot of stiffness in my neck before my surgery...not as much now, but sometimes on the left side it still stiffens up some. I don't remember ever having the type of head pain you are describing, though.

FWIW, I do have numbness in the left side of my face; started the same time as the TOS symptoms and hand numbness, but I've had a couple of docs mention that they didn't think it was from the TOS. They said that would be from cranial nerves, not the brachial plexus. I wonder about that, though...neither of those docs were my regular doctors, and none of the others ever told me that.

I would be curious to see if others have any facial symptoms...I know when I had the interscalene (brachial plexus) block, my left eye drooped and face was even more numb than usual. I do get twitching in that eye when my arm is really flared.

I hope you find some answers, and relief for your head pain!

Take care,
Donna