I was recently diagnosed with TOS. I have moderate pain in left shoulder, neck, along collarbone, upper back, sometimes in my left chest , sometimes a little pain at edge of armpit but no pain, numbness or anything with arms and hands. I have had stress test, heart ultrasound, x-Rays of chest and shoulders. At first, ortho dr said it was unusual presentation from a herniated disc found with cervical MRI. Physical therapist sent me to see a Dr in James Andrews practice in Birmingham and he agreed with the therapist that it was TOS. I pointed out no hand symptoms and he said it was a little unusual presentation but it was TOS, not from disc problem.
Anyone else have this? I've been reading a lot of posts and it sounds like most everyone is in terrible pain. Really mine is not that bad, I just wanted to know what it was. Thanks for your help.

I didn't have terrible pain, my hands just stopped working for awhile... I had continuous discomfort and odd moving around RSI's , wrist , hands, thumb, elbows, shoulder , neck, etc.

I suppose I was more of a "pre TOS" than full on TOS.. but it is better to catch it and find best therapies to prevent the full blown version...

I still can't hold my arms up for very long before they turn white and start to go numb, but I can live with that.

I would suggest Sharon Butler's website for articles & info and her book is in libraries.

And some gentle posture things I do --
http://neurotalk.psychcentral.com/album.php?albumid=422

It's great your PT knew about TOS , I hope they can help you to turn it around, it does take a lot of "homework/self care" and ongoing to keep it at bay.

I bought a lot of things to help my own recovery..far infra-red heating pad, digital IF stim, ultrasound...
Early on I did buy a shiatsu massage recliner I would come home from work and collapse into it to recover from each day of work...ice on my forearms and heat on my upper back...

But I didn't really see a major improvement until I was written off work.. the PT was not able to offset the ongoing use while still working.

I also found a very good chiro that was able to do more than adjustments only...he did soft tissue , trigger point, the IF stim, & a low level laser... and top rib mobilizations..
I don't know if you PT does all of those, or just more of a standard protocol..

If they are having you do using hand bikes, stretchy bands, and repetitive things that is usually not the best way....

I started with similar symptoms that over time got worse. I would get an EMG from a neurologist who is familiar with performing EMG on this area. Mine showed suprascapular (supraspinatus/infraspinatus) and dorsal scapular neuropathy (rhomboid/levator scapula). Basically my entire upper back/neck shoulder area on the right side was irritated. Very minimal arm symptoms and no hand symptoms. The neurologist actually referred me to a vascular surgeon who also diagnosed me with TOS. After years of failed PT, I opted for TOS surgery (brachial plexus neurolysis, first rib removal, pec minor tenotamy). I'm now worse off because I still have all the symptoms I had before surgery plus scarring on brachial plexus which has given me chronic burning pain from sternum, mid part of chest up to collarbone.

Yes the internal scarring can be a major issue, some will have it pre surgery due to rubbing /irritations, but after surgery it can come back with a vengeance...

I think some people just tend to develop scar tissue more than others..
TOS surgery does take a lot of moving things around to get at the rib & scalenes, so some irritation is expected, but hopefully fades away and not increase post op.

Thank you all. My chest, shoulder are a little painful to the touch when I press around there, like around collar bone, top and end of shoulder. Is that normal with TOS?

Our sticky threads are loaded with TOS websites, symptoms, diagnosis, treatment info & links. Also some saved threads there with list of our various symptoms.

http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread135.html