I am so sorry this is happening to your daughter. While her sx certainly comport with a TOS dx, I agree that you need more than just an hour spent with a therapist to confirm a dx of TOS, because it's very tricky. The sx of TOS can mimic so many other disorders (cervical spine issues, carpal- or cubital-tunnel syndrome, BP stretch injury, heck even the elbow tendinitus can and do masquerade as TOS) that you really need an expert in this.

If she were my daughter, I would book an appointment for her asap with Dr. Donahue at MGH in Boston (type in his name using the forum search function on this forum and you will see why!). Dr. D is a top TOS doc (who tend to be vascular surgeons vs. neurosurgeons) and is on the cutting edge of tx for TOS. I can't recommend Dr. Schneider based on his rep here in CA. Send me a PM if you'd like to know more…

Dr. D will do an extensive clinical examination, take her medical history, order certain tests, etc. to not only confirm whether this is TOS or not, but to find out which type of TOS is at play here. Could be vascular (arterial or venous) TOS, "disputed" neurogenic TOS, "true" neurogenic TOS, or a combination of types, and it is very important to determine which so that he can provide the right tx as well as predict how she's likely to do with TOS surgery (or if surgery is even indicated in her case).

Another likelihood is that he will recommend that she have Botox injections into her anterior scalene and pec minor muscles on the affected side. This could help to confirm the dx, predict whether she is or is not a surgical candidate, provide months of pain relief and better her chances at a successful course of PT (6 months, I think) with a TOS-savvy therapist. Hate to say this, but as Jo said if the focus of therapy so far has been on strengthening the affected muscles, that is not the correct approach at all for this! Traditional PT ("shake and bake," "no pain, no gain" therapy) not only won't help her, it could HURT her, making the ailment even worse. Hopefully, Dr. D will be able to recommend somebody closer to where you guys live to work with her. Finding the right PT can be a challenge, but they're out there.

Keep reading and asking questions, we are here to help. One thought I had is that the new PT could give Kinesio Taping a whirl, to see if that will help with her pain and other sx in the interim. Lots of other modalities to try (cold packs, moist heat, e-stim, etc.); the TOS PT will know what to do. Edgelow and Butler are both very well respected, but no reason to choose between their modalities - their distinctive approaches both have a lot to offer. It's a matter of what works for your daughter!

Well, that's it for now. Wishing you both the best of luck. We'll be here if either of you needs us.

Alison