I was diagnosed with bilateral TOS just recently after developing collateral vessels and a swollen hand while pregnant. I've had very mild symptoms for years (mild shoulder pain once in a while and arms tiring when held over my head for a short time) but had no idea they were part of a syndrome! I'm currently in between seeing a local doc and a specialist at UofMichigan and contemplating whether surgery is right for me. It's been great to find a forum with others who understand how frustrating this can be (although it sucks that anyone has to go through it, of course).