Hey everyone, I was so happy when I found this online community! I've had neck/back/shoulder/hand issues off and on for the last 20+ years. I had my first bad pain episode when I was 12, and got sent off for the standard routine most of us seem to get sent through - PT, postural reeducation, nothing useful. Started having disabling episodes of back pain in college, and episodes where I couldn't use my right (dominant) hand for much of anything around then too.
No progress until about 4 years ago when one of the GP dr's at my clinic suggested maybe we should get a simple x-ray of my spine. He found I have cervical ribs on both sides, and said, well there's your problem. It took me another 4 years, many episodes of PT, 4-5 different specialists, 2 cervical epidurals that did nothing, and 4 MRIs, to find a good dr who listened to me and agreed with me that I have TOS. The main person that pushed me to keep trying to get an accurate diagnosis was my PTs, Lisa and Dan, who have been awesome and were treating me (with all the correct treatments, rib manipulation, nerve therapy, and very gentle stretching) for TOS even though my prescription from my original dr said it was just a degenerated disc.
sx: Pain in my neck, upper traps; numbness on both sides, heaviness and weakness when I use my R arm, pain in my R hand, and random shooting nerve pain that comes and goes. Chronic low level pain. Loads of occipital headaches. I have bilateral NTOS, possibly some mild venous or arterial compression too.
I'm working with Dr. Gelabert at UCLA, and so far he's been amazing. Given my looooong term history with this, the ridiculous size of my cervical ribs, and the multiple treatments I've already tried, I'm probably headed toward surgery this summer.