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Originally Posted by laura18

Hey Im Laura, I live in Ireland and have recently been diagnosed with TOS.
I'm only 18 and have no history of injury..my symptoms started over 6 months ago; left hand EXTREME weakness, coldness and my arm is very discoloured, pain across my shoulder blade and down my neck.
Spent a week in hospital after I was sent in with a possible blood clot : clear MRI and nerve conduction studies showed slight ulnar nerve entrapment at the elbow ( could be present in normal people i was told)
sent home with diagnosis of "possibel trapped nerve" and NO treatment.

Then and osteopath diagnosed an elevated first rib and manipulated it and all my symptoms disappeared- MIRACLE!!
THis continued to happen about 5 more times, and I returned to the osteopath every time this happened!

A month ago it got progressively worse and my osteopath told me he could do no more for me and that I should go the medical route AGAIN!
Went to A&E and finally saw a vascular surgeon.. I had a Doppler scan done and that shows my arteries are healthy thank god..but could not tell if it was being compressed at the thoracic outlet with just an ultrasound,
he found a loss of radial pulse at 180 degrees and put me on LYRICA, ASPIRIN & a vasodilator PRAXILENE..
Saw his colleague two weeks later and he finally officially diagnosed me with TOS.- but he now believes it is NEUROGENIC which is really confusing me.. my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist and it is like a block of ice.. I really believe I am suffering with the symptoms of arterial TOS..

Being admitted next week for an MRI to check for extra rib ( osteopath cant feel one though) CT to check the artery and chest x rays etc.

Im so glad to find people that know how debilitating this condition is.. I cant write, tie my trousers, tie up my hair etc..basic daily activities. And as for the Lyrica..that deserves its own thread!!!
Sorry this is so long..

Sounds like your case is clearer than most. I also had the disappointing hospital visit where they could neither diagnose nor treat me. Later I read in a paper by a vascular surgeon that TOS is under-diagnosed in emergency rooms. I believe it!

One thing you have to watch out for is that the longer your symptoms go on, the more damage is being done to your body. I think you should be going to your osteopath on a semi-regular basis to "keep things at bay" until you get a better fix.

I eventually learned to do neck stretches and a first rib adjustment that mostly accomplish what your osteopath does. Now I can fix myself up within minutes instead of waiting for an appointment. Consequently, my secondary symptoms have gone down a lot.

You can start here to see what I'm doing:
http://neurotalk.psychcentral.com/post853563-17.html

Good luck!