Originally Posted by Moxie

Hi all,

Thought I'd share my story with you all because it took me a long time to decide to have surgery for my condition. I am a 32 y/o healthy and active female who had been working in public health and medical research consulting for the past 8 years. I am now 4 weeks post op for venous and neurogenic TOS - I had a 1st rib removal and anterior scalenectomy. My symptoms started 16 months ago with progressive tingling, numbness and weakness in my left hand. A little over a year ago my left arm swelled suddenly to a point where I went to the ER and was diagnosed with an upper extremity DVT and 2 PE's. After hospitalization for clot and PE's and 6 months of warafin and multiple consultations with every kind of dr. I started to learn about TOS. Initally I thought my arm pain was because of the clot and now I realize that the clot was caused by the TOS - the venogram I had was the most telling and conclusive test - I could literally see how the blood flow stopped when my arm was abducted away from my body. I resisted surgery (even after the venogram) b/c of the lack of conclusive medical evidence that surgical intervention would improve my condition and not exacerbate or contribute to long term biomechanical and structual changes in my body-- I consulted with 5 different thoracic/vascualr surgeons -- ultimately I decided on surgery bc of the risk of another DVT. A DVT can kill you - especially with the associated risk of PE's. I am very glad that I chose the surgeon I did - Dr. Dean Donahue at MGH - I had consulted with drs at Johns Hopkins, Georgetown, Cleveland Clinic, Kansas, and Suburban. Each had a different diagnosis, surgical protocol (some suggested a stent!!! can you imagine?) etc. My surgery lasted just under 5 hours and after 7 days int he hospital I am recovering well at home with almost full range of motion in my shoulder and arm. I would be happy to talk to anyone with venous TOS who is considering surgery - I was scared to do it but am really really glad I did.