I would hope the MDs of the TOS consortium would know of qualified PTs also.

It might take a few calls/emails to some of their offices to build a listing of PTs that they recommend in your area.
http://surgerydept.wustl.edu/TOS_Consortium.aspx

If they don't have a qualified PTs listing they are lacking in that aspect of TOS care..

I totally agree. Wish everyone in the medical community was more knowledgeable about TOS, it certainly would help if they could recommend PT's who are specialized in the care of TOS patients. Surgery or not a good PT is such an important part of the whole healing process. Unfortunately it's under rated.

I was referred to Hopkins. They are 2 1/2 hrs away from me. I asked if they could recommend someone in my area or I would drive to northern Va or DC. I was handed a 2 page PT protocol and was told that "any" physical therapist could follow it. By reading the posts here and from the TOS support group, a good PT is very important. I will keep searching and thanks again for your help.

Was the protocol specific to you or a general protocol for TOS? If general, would you share it? Just curious what it reads.

It was general non specific. I will be happy to share it. I will be out of town next 2 days, so I will send it when I get back. It actually is used for Post Surgery - it is scratched out at the top and PT is written in.

When you are looking for a new PT, Please just make sure they understand TOS and specially be careful they don't mistake TOS for Cspine issues.
I have got badly injured once with PT putting me on one of those traction machines for 15 mins for neck traction before I had my surgery and I went on a downward spiral that sent me into so much pain I was down to tears. My surgeon told me that traction is the most brutal thing you can do to a TOS patient.
Also we TOS er's find it hard to strengthen with therabands, be really careful as the that tension can increase the compression on the nerves. Tell them to modify whatever you can't do into baby steps, please don't do anything that gives you a lot of pain.
Sometimes our pain comes much later, and not when you are doing the exercises. So listen to your gut.
They should always start with soft tissue massage and mobilization before they make you do any exercises.

Yes, i have already had the terrible traction experience along with putting me on an exercises bike with moving handles! Everyone i've contacted in my general area said that they could treat me but they would have to "read up" on it. I have the protocal that Hopkins gave me to take to PT. They said anyone could follow it but I am scared to take that chance.

I was also given a few pages of a TOS protocol for myself and also one for therapists by Jason Lund in Denver. He is the therapist Dr Annest had me see pre and post op and is very experienced. If you want, I can also try to scan in and send that to anyone who wants to take a look. I am not sure if I can attach anything on here though so I may have to send it to a personal email. PM me and once I get settled in after my flight tomorrow I can do that as well.

I would like to see it. You can scan and attach something if it is not too big and it is not copywrited.otherwise you can e-mail it.

I did fancy traction for 3 months with a high end chiro who charged me thousands of dollars. This is before I had the TOS diagnosis and just a bulging disc. I kept telling him I didnt think the traction was helping and he kept insisting it was. when I finally told him I suspected TOS he did a standard pulse test and told me I didnt have it. Once I got my TOS diagnosis I stopped seeing him. The lesson is Follow your instincts and dont wait 3 months to change therapists.