Originally Posted by TOSurviver

For some background info:
I'm a healthy, active 19 year old, and I've had TOS for over 4 years now, been diagnosed for about 3, and have not responded to medicines or physiotherapy. About 2 1/2 years ago I had a left rib resection and scalenectomy to try to fix my worse arm (left) and initially the pain went right away, but after about 6 months the pain started returning slowly at first; and now I have a considerable amount of pain in both arms daily.

But here is what I really want to know:
1. My surgeon told me that my operation was really the end of the line in terms of treatments for me...is this true? Do I really just have to live with a chronic pain for the rest of my life? Honestly all I feel like doing is getting my nerve cut out...that might seem drastic to some but those who have had chronic nerve pain surely you understand?
2. I have never really been much of a runner, but for the past 2 year I have noticed that if I do try to go for a run, literally about 100m (max) into the run my arms will start to feel really weird and heavy and slightly tingly, and my hands will go really really white/yellow. then I have to stop because it hurts heaps and the red colour slowly comes back into my hands as blotchiness..
Has anyone else noticed anything like this? Is this something that I should be worried about or at least see a doctor and get a referral to a neurologist about it?

Any advice/similar stories/ comments about anything would be MUCH appreciated!! I just want to hear from someone in a similar situation! I have never met anyone with TOS so I'd love to be able to talk to people who actually know about it and understand a bit more...