You've come to the right place for answers; there is a wealth of information in the "sticky" threads at the top of this forum, and you can use the forum search function to find threads and posts about VTOS, pain management, PT, etc. I am glad you're here but sorry for the reasons why. I was stricken with "true" NTOS while still in college, and can really relate to some of the concerns you have with respect to note-taking in lectures and stuff. Go as easy as you can right now on your affected side, avoiding or toning down activities that trigger symptoms for you.

Try not to worry too much about the prospect of surgery. If you do have VTOS it is a mechanical problem which generally responds very well to TOS surgery. Most of the "horror stories" you will read pertain to NTOS, which is much more resistant to treatment (including surgery) than is VTOS. Your recovery period would also be much shorter than it would be for an NTOSer if you do need surgery.

VTOS is also easier to diagnose. It sounds like you've been put through some provocative tests clinically (and tested positive for TOS), and the venogram does sound like the next logical step. You should be aware that TOS is NOT an orthopedic problem, it is a neurovascular entrapment disorder. It doesn't usually show up on diagnostic imaging studies (MRI, CT scan, etc.) or even on electrodiagnostic tests (EMG, NCV). That doesn't mean the diagnosis is incorrect. What you really need is a vascular surgeon who specializes in TOS. Check out the Drs and PTs sticky thread to see if there is one listed for your state; otherwise, it might be worth your while to travel to one (Johns Hopkins in MD has a good vascular surgery department, for example). Consulting a surgeon does not mean you will have to go under the knife, by the way.

I agree with Jo that you may need some prescription-strength pain meds to keep you comfortable through the process of getting an accurate diagnosis, prognosis and treatment plan. Don't hesitate to ask your doc for this, as well as a good muscle relaxer and maybe a sleep med. You should also probably be on some type of blood-thinner to ward off blood clots, if you're not already.

Most TOS surgeons will have you try noninvasive stuff first, like PT (with a TOS protocol) for a few weeks or months, as well as lesser invasive things like a scalene/pec minor/subclavius muscle block and/or Botox injected into these "culprit" muscles - your responses to both of which procedures are good indicators of how well you would do with surgery. If you go the PT route, please, please make sure it is with a TOS-savvy PT! Traditional PT, with its emphasis on strengthening, "no pain, no gain," etc. is the exact wrong approach for TOSers!

Good luck to you with everything; keep posting here to let us know how you're doing, OK? We are here to support you and will be happy to address any questions or concerns you may have.

Alison