Prudence,

It's bad enough going through this oneself, I can't imagine being a parent of a child with TOS. I have neurogenic TOS, not vascular, and have been going through this for almost 8 years.

For me, PT did more harm than good. I had surgery about 2 and 1/2 years after my symptoms started. I didn't have a good outcome from surgery. I'm worse as a result.

I shared your sense that the results of surgery were not good. I was also frustrated by the fact that there was no consensus on how to do the surgery, when to start PT, what PT should entail, etc. I felt like I was always comparing apples to oranges. But I went forward with surgery because I'd exhausted my options and didn't know what else to do to try to get better.

My sense is that surgical results with vascular TOS are better. With nerve related symptoms, if surgery is warranted, I would want to do it sooner rather than later. The longer the symptoms go on, the more likely people are to have long-standing problems. (This isn't a medical opinion, just an anecdotal observation.)

I think it makes sense to get yourself to one of the doctors in Denver if you can manage that. Get several opinions. Then you've got to do a gut check and figure out how to proceed. I do think that your daughter needs to be onboard, since it's her body and her future.

Good luck,
Kelly