When I read your story and answers it helps me with my problems. I too have TOS bilateral. I have had TOS surgery on the right side by Dr. Sanders and on the left side he took out 4 inches of muscle under my right arm and both surgeries I saw at least 75% improvment. I really like Dr. S. He did my last surgery in 04 but he just called me a month ago to check on me.

My ribs are out of place also. I had a PTer that said that your ribs don't move then I had another one that says they can. They put my ribs back into place about 4 times in my Physical therapy and they still moved again. I spent over 4 years in PTfor everything going on with me on my upper half and at this point I do know I will never get completely well.

I fell too many times and landed on my left side and it was bad then I went to a Osteopathic Dr. and she popped my bones and messed up my right side. It is now 10 times worse then my left. I actually think she broke my right arm. I have had to have 2 rotator cuff surgeries, TOS surgery, Ulner nerve surgery and I'm still looking at surgeries for Triggerfinger syndrome, carpal tunnel syndrome and radial nerve syndrome.

I feel like those Nerve Conduction Studies are a joke. When you talk to people here you will see very few that showed anything positive. The Neurologist that did my 4th one said that if they don't show anything then there is nothing wrong. The Dr. that sent me to him actually called him up and gave him hell for telling me that. He was one of 4 Drs. that had diagnosed me with TOS, RSD, and all of these other nerve problems.

Jo is so right. The more help you have on this the better answers you will find. It took me over 3 years to get diagnosed with the TOS and I can't even remember how many Drs. I saw before I was able to get the diagnoses. Then after you are diagnosed, like RSD, no one knows what to do for it.

When I found Dr. S. he just jumped in and took care of me and worked with my PCP to take care of me. I give him credit for me not killing myself from the mess I was in along with my PCP.

I still have TOS on my right side. I know that but the only time I notice it is when I lift my arms to look at clothes on a clothes rack or hang clothes on a clothes line. I do watch how much I lift. I don't have the numbness and tingling like I had in my hands. I still need the surgery on the left side but I have had to many other medical issues to deal with it but I do know it is going to happen. Dr. S will do it when I'm ready. He knows all I've been through otherwise and he has helped me find Drs. for other problems I have had.

Don't give up on PT but don't let them make you lift and do things you can't do. I ended up with myofasical release therapy and lots of massages. She also pulled on my arms gently to get the muscles and nerves straightened out. I quit 2 PT'ers so you don't have to go to the ones you don't like, remember that.

Tens units are used for TOS and they work good. I used one for years. I also use Lidocaine patches where ever I need them.

My nurses can never get my pulse on my left side but since I had my right side surgery they can find that one now.

Don't get discouraged, TOS takes quite awhile to get any control of and make sure you don't keep going to Drs. that make it worse. If you see they are making it worse, don't go back or tell them.

As I said your story sounds a lot like me, Joanna.

Feel better soon,
Ada