Hi everyone. I just joined this forum and I am so relieved to know im not the only one struggling with this. I too am hoping to get some feedback from other sufferrers about their post surgical outcomes. Just to sharw my story (as briefly as possible) i was diagnosed this past june with venous tos after I painted my living room and developed a complete occlusion DVT in my right subclavian vein.

I never really noticed any symptoms prior to this,i always just tbought i had decreased strength and my arms went numb when doing my hair\above my head. Initially they diagnosed me with paget schrotter but when they did the venogram they noted long term damage in my subclavian. I underwent 1st rib and anterior scalene removal and was sent home. 10 days later I was diagnosed w another clot in my subclavian and a clot in my axillary vein. They did a trellis procedure to remove the clots and sent me home a few days later. I will be on lifetime coumadin because I was also diagnosed at that time with antiphospholipid syndrome, an autoimmune clotting disorder. Additionally,I've had symptoms on my left side as well.

I just saw my doctor for my followup. At the time of my surgery he said it would take a full year to recover and to know if there is lasting damage. Since surgery I have suffered with chronic pain, swelling, and occasional discoloration of the arm, spasms in my neck&back, inability to sleep on my right side, numbness, tingling and what I think is neuropathy. I asked my doctor why I was in pain, he said he didn't know, that it wasn't post thrombotic syndrome and that it was likely 'nerve adhesions'. My options are a venogram to determine if surgery to repair my damaged subclavian is possible. My surgeon has only done 5 in his career. Being that I am only 28, and I am unable to work I am considering surgery but, due to my doctors lack of experience and a bad experience with a resident during my last procedure I am seeking out a specialist. (It is always your right to refuse care from residents&students and I encourage it, there is no reason to allow someone to practice on you when doctors who have been doing this over 20yrs still lack experience treating the condition) anyway, i feel that everyone should get a specialist and second and even third opinions, when considering something as important as surgery to regain function of your limbs.

From the research I've done, there are two doctors I am looking into. Dr Robert thompson at Barnes Jewish thoracic outlet centet in st Louis. And Dr dean Donahue at mass general. Additionally, on my search I found a Dr in Denver and a few in California. And one in Arizona that had a lot of positive outcome patient reviews. I should've written their names down too but I'm I'm upstate ny so I didn't write them down but this site has a great list of drs. Who specialize in tos. In a different thread

If anyone else here is reading this and has had experiemces with either physician if you could let let me know how it went I would b so appreciative.

I wish you all the best of luck with your conditions and would b happy to update you on how things go with mine.

:-) mck


"Autoimmune disease, because the only thing tough enough to kick my ***, is me!"