Getting on with Life as well as I can

[Ms. Toad]

17. I don't know about port clots -

but I've lived with DVT at the Thoracic Outlet for years (VTOS).

My "clot" will never vanish - but it's not really a clot any longer; Some of it resorbed leaving a mass of fibrous tissue. There's now a tunnel through it - and off and on it blocks off again. But (like you) I developed collateral circulation so the blood found its way back to the heart. I have big fat veins all up my left arm & across the surface of my chest - and always will have. (When it happened on the opposite side 2 decades later, they knew how to remove a rib to fix the problem - so I'm missing a rib on the right side.)

DVT in the legs is often a lifetime "sentence" with blood thinners. For VTOS it is a shorter period because it a structural birth defect caused it and it is not likely to recur in random other places. Once the danger of the clot breaking off and moving to my lungs passed, I was able to stop taking blood thinners. Because yours is structural (caused by the port) I'd guess shorter rather than longer on blood thinners for you.

Best of luck!