Hello all,

I am desperately trying to find someone who has a similar type of condition as I do since I have been unable to get treatment. I had Paget-Schoetter syndrome (venous TOS) 5 years ago and ended up having my first rib removed and vein replacement. Last year, I began having a lot of strange symptoms and, after going to John Hopkins, was diagnosed with Neurogenic TOS; however, my condition is backwards. Normally, with NTOS vein compression occurs when the arms is raised, but for me, it is opposite. When my arm is down in normal position the vein is compressed and opens when I lift my arm. Due to this, I have absolutely no idea what exercises I could do or what treatment is available. I have done physical therapy for months with no improvement and I've had the botox injection which made things significantly worse. I was told this was very unusual as well and because of that, surgery was taken off the table. I now have pain every day and have no idea what to do about it. I spend hours researching, but have been unable to find another case like mine. If anyone has information for me, it would be greatly appreciated.