Help with venous TOS
21M
So about a week ago I got diagnosed with vTOS after presenting to the ER with a swollen arm. Fortunately, I had no blood clots at the time.
The reports said my symptoms were mild, but my arm is constantly swollen, but does vary based on position. However, since then I've ceased all overhead exertion, which I believe was my primary risk factor. Outside of this, my symptoms are random mild pain, but general heaviness.
Mentally, this has been so challenging for me because I haven't been able to really speak with any experts on this. I keep coming back to this and thinking at any moment I could have developed blood clots or have one actively developing. I see posts on this sub of people with just the arm discoloration having blood clots and it's freaking me out. I'm not on any blood thinning medication, and I dont know if I have any clotting disorders.
The only thing I have right now is PT, but some of the exercises cause my veins to bulge more than they generally do. I don't know if I should be doing those, or resting.
I'm honestly just so terrified of the surgery and blood clots it's mentmentally debilitating at times. I really don't want to have to get the surgery, but for venous TOS, the internet seems to suggest it's the primary option. The ER only said I needed it if my symptoms progressed.
I have some appointments coming up, but they seem so far away for something that feels like it can change my life in an instant.
This swollen arm is just throwing my life sideways and keeping my health anxiety at an all time high whenever my mind wanders back to this. Anyone have any advice?