Hi, bmod,
if your willing to travel to Toronto and able to get a referral, my surgeon was Dr. De Perrot (Thoracic Surgeon) at Toronto General Hospital. your completely right. NOONE knows what TOS is (well my surgeon did). There is also a non-surgical specialist at Toronto General, in the Vascular Clinic, I can't seem to find it in the hospital directory (your doctor might need to contact the clinic to inquire), he only works there part time (one day a week i think) that specializes in TOS, that was as of May 2013 - I hope he is still there.
Dr. de Perrot might even be able to refer you to another specialist if you prefer. He made me feel super comfortable, was very blunt, thorough and honest. He might also to refer you to the specialist in the vascular clinic.
Please let me know if you'd like his details
Katie
Quote:
Originally Posted by bmod
I was diagnosed with neurogenic TOS in Vancouver before moving back to Ontario. I had a positive nerve conduction test indicating C8-T1 wasting and recommendation for first rib resection.
HOWEVER - things took a big turn in Ontario. I've been to many specialists ... and not one specialist seems to know what this condition is, OR how to diagnose it, OR treat it!!
All symptoms point to neurogenic TOS, but here is the kicker - I also had a previous break to the distal clavicle. So it seems I only get consideration for orthopedic surgery. I had a bony abnormality removed from the distal end of the clavicle which is healing fine - but ALL the TOS symptoms are still there. The only relief I ever experienced is when I had a scalene block for the shoulder surgery. Again - this indicates TOS!
Can anyone recommend a specialist in Southern Ontario that I can go to that really understands this condition?
Please, please help! Geeez Ontario, you think there would be a better standard for diagnosis & treatment in this province!
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