So after 5 long agonizing years of wondering what is wrong with my left neck, shoulder and arm..after mutliple nerve conduction tests, MRI's, injections, and two surgeries...I finally get to see Dr. Thompson. He says I definitely have neurogenic TOS. In a way what a relief to finally know what is wrong with me. I received two muscle blocks while at Barnes Jewish. They didn't really make any difference. I know that a negative result from the blocks is not rule out TOS, but nontheless a bit disappointing. He has prescribed me physical therapy and I'm currently looking for one in my area (Little Rock) who can work with me. Does anyone have experience with a physical therapist in this area who has worked with TOS patients? I have had this for five years and honestly I'm not convinced that the PT will help much. Do any of you know what percentage of people improve from PT? I know the only other option is surgery but I'm afraid of that too (perhaps because I'm a surgical nurse and I take care of patients having thoracic surgeries, but not for TOS). Can advice or suggestions are appreciated. Thanks!

[QUOTE=intrepidreamer;1018438]So after 5 long agonizing years of wondering what is wrong with my left neck, shoulder and arm..after mutliple nerve conduction tests, MRI's, injections, and two surgeries...I finally get to see Dr. Thompson. He says I definitely have neurogenic TOS. In a way what a relief to finally know what is wrong with me. I received two muscle blocks while at Barnes Jewish. They didn't really make any difference. I know that a negative result from the blocks is not rule out TOS, but nontheless a bit disappointing. He has prescribed me physical therapy and I'm currently looking for one in my area (Little Rock) who can work with me. Does anyone have experience with a physical therapist in this area who has worked with TOS patients? I have had this for five years and honestly I'm not convinced that the PT will help much. Do any of you know what percentage of people improve from PT? I know the only other option is surgery but I'm afraid of that too (perhaps because I'm a surgical nurse and I take care of patients having thoracic surgeries, but not for TOS). Can advice or suggestions are appreciated. Thanks!

First, welcome to the site. Sorry to hear about your TOS situation. I've been dealing with TOS for 20yrs, so I know what u are going through. I've been through all the test, PT's, and two surgeries. Heading for possible third surgery in Dec. To be honest with u, I don't believe PT is going to help. I recall going to 3 or 5 PTs, and I would feel good for a period of time, but once I started back to work or doing other activities, my problem will return. Surgery may help for some, and for others it hasn't help. In my case it hasn't. My suggestion is to go ahead with the PT, and I pray that it helps. If it doesn't, pray about the surgery, and if u decide to go that route, ask a lot of questions. Make sure they explain everything about your procedure. Please keep us updated with your situation, and please know we are all in this together. U are not alone. May GOD bless, keep, and heal u.

PT has helped me and I also just have neurogenic TOS. But it is a long road and I am not completely better, some days no pain though. I havent returned to work though either. You do have to find the right PT and also do the home exercises. Check out this list to see if there are any in your area.Some of these have the training to do rib mobilization and understand TOS. It is definately worth a try.
http://www.instituteofphysicalart.com/ipa/referral/list