Hi, Magic Mom! I am so sorry for what has happened to you and the pain that it has caused. If you can find a pain psychologist (this requires a special certification in pain management, I believe), you might find it helpful in dealing with all of the losses and limitations being in pain 24/7 can bring. It is vital when dealing with the diagnosis and treatment of TOS that you seek the care of a top specialist in this complex and controversial area of medicine. Dr. Dean Donahue at MGH is very skilled at doing re operations to correct recurrent symptoms and complications from a first TOS surgery (usually a first rib resection with a partial scalenectomy) that has failed. Dr. Lum at Johns Hopkins is also very good... although I'm not sure how many re ops he has performed. The other important thing is that you receive PT from a manual physical therapist who is knowledgeable and experienced in the treatment of TOS. Suparna Damany (who's practice I think is in Allentown, PA) co-wrote a book on PT for TOS; I believe the title is "It's Not Carpal Tunnel Syndrome"; another talented PT and author is Sharon Butler. Please check out the "stickies" at the top of the TOS forum - you will find a great deal of useful information and medical literature on TOS captured there. There is a pain management specialist named Dr. Schwartzmann who has helped many TOSers in your state. Also a guy named Dr. Neil Friedman, DO is the best person to see for EMG, NCV studies, etc. - He is located in Blue Bell, PA. I'm sure a Google search will turn up their websites and more about their medical and PT practices. I hope you find help soon, as I know from personal experience how debilitating this kind of thing can be. Getting misdiagnosed with other disorders before finding the true cause of compression is actually vascular or neurogenic TOS, unfortunately, is not uncommon. TOS is not as rare as doctors who are not that familiar with it may think, but it can be difficult to diagnose and some forms are resistant to treatment. I wish you the best of luck. Knowledge is power, Magic Mom, and there is help out there. Please stay close and keep posting any questions and concerns. We are here to support you in any way that we can. Hang in there! Alison