Originally Posted by Mcmanisport

Hello everyone!
I would love someone's opinion who has been through what I'm going through, because my head is spinning trying to decide what to do.

I was diagnosed with TOS a few years back, and have since cut my hours at work, and see a physical therapist and also chiropractor/massage therapist because of it. I have pain in the area which runs from my neck to my shoulders all the time, but have gotten used to it. I also have tingling, numbness and cold in both my arms and hands all the time. I thought that was all that could occur from TOS.

Recently I was diagnosed with a subclavian blood clot and treated with bloodthinners. Was seen by ER doc, hematologist and general practitioner. No one could have any explanation for what caused this. Finally after a few weeks, my practitioner told me of a condition called Paget Schroetter syndrome and told me to look into it. She put my in contact with a Dr she knows that specializes in Paget Schroetter. He is far away, but he ordered me a venogram to inspect the clot.

So, the venogram does show that my vein is still completely shut due to compression of my first rib. The vascular surgeon told me I need rib resection and release of some muscles and repair of the vein.

I asked him if he knew of anyone closer to me, as we are many states apart. He said no, there is no one in NJ, NY or PA who can do this surgery for me, and I should fly out to have him do it.

I told my hematologist about this and she told me that Paget Schroetter disease or effort thrombosis is hog wash and to continue taking my blood thinners and thats all I can do. She said as long as I dont have an extra rib, I cannot have this disorder.

I am so confused, I dont know what to do. Should I really travel 1,000 miles away to have this surgery done by someone who supposedly has a good reputation, but whom I havent even met? Has anyone else had this dilemma that could offer some advise to me? I'd appreciate it very much!!