Hi everyone,

I'm new here for posting but have read this forum a few times before when my symptoms started in January of this year - reading everyone's comments has really helped me. This forum also encouraged me to persist and find a TOS specialist after FOUR doctors dismissed me when I said I thought I had TOS (none of them actually did diagnostic testing or imaging - they just looked at me and said, "no, you're not a weightlifter, you don't have TOS, you're just stressed/anxious/have a pulled muscle").

I am in Boston and finally found a great thoracic surgeon who studies TOS. He ordered a CT and some sort of specialized MRI and did all the movement/arms-above-head tests in his office. Both scans showed significant compression of the right-side thoracic outlet. He said I'm a three on a scale of one to four, one being no compression, four being the worst compression. I have an elongated C-7 and some weird tissue bands between it and my first rib (pretty sure I got that right...basically, I have no room in there!).

Oh also, I broke my right collarbone when I was about ten and it healed sort of "lumpy," so I'm sure that doesn't help.

Initial symptoms:

Choking sensation on both sides of the base of my neck/throat and collarbone
Right side of neck seized up - movement was very difficult
Neck felt swollen
Pain radiating through collarbone, neck, jaw, and ear
Pressure in eye

Current symptoms:

Pain in right side of neck
Rights side collarbone pain, usually sharp and sudden
Can feel pulse in right side of neck when lying down or sitting still, right side pulse in neck is strong than left
"Whoosing" in right ear
Right side jaw pain
Pain in forearm and bicep
Tingling in right arm sometimes wakes me up
Extreme tightness on right side trapezius, shoulder, the "ridge" across the top of my torso from neck to end of shoulder
Can feel pulse in bottom of right foot (weird, I know), especially after a lot of walking or mild exercise

I also can't stand for anyone or anything to put any pressure near my right collarbone. Makes me feel very icky.

I think I'm the same as just about everyone here with what makes symptoms worse - basically, using my right arm, ever! Especially above my head or carrying something heavy.

What helps:
Valium
Rest/sleep (usually feel best in the morning)
Warm showers

I used to LOVE massage and got one weekly to help with migraines, but I've found that no matter how careful my massage therapist is, massage tends to exacerbate my TOS symptoms. Really depressing.

I haven't tried PT because my plan with my doctor was to try the Botox injection in the scalene first, then start PT. But of course my insurance won't approve the injection - we've been fighting with them for about six months. So right now I just try not to do anything to make it worse and take a half a Valium when the pain flares up. I'm thinking of just starting the PT anyway.

Anyway, I hope this wasn't too long. Thanks to everyone for sharing and good luck to all.

Nic