Your story, and i read it all is true to all of us who have gone through the TOS shuffling to find answers from the pain. Its insane and patients need to be educated before they go to a physician, physical therapist, surgeon before subjecting themselves to "ish" we go thru. Meds and surgery are not the answer for all cases but needed and only perscribed by the educated TOS professional. Pain management cannot help unless you are diagnosed and the clinic/clinician is also educated on the rights and wrongs to treat.

Here is the site of the Thoracic Outlet Syndrome Consortium.

http://surgery.wustl.edu/TOS_Consortium.aspx

These are the best of the best, educated, qualified and most worthy group of professionals from all over the nation who have come together to create a handbook on TOS. There will be a patient handbook piggy backing. It is in the hands for revisions and reviews.

For those who are just now getting diagnosed, the unfortunate ones who are on-going trying to find answers. This is going to be the key to success. Its all about finding the right physician medically educated in TOS, diagnosing, testing, surgical necessity and getting treatment quickly.

Hope this helps.
We are working on a brochure coordinating with the above for not only the patient, friends and family but the medical professional for you to hand to. Kinda like a medical alert 101 on TOS.