VTOS
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Hey guys, I posted on here back in August 2017 with PEs in both lungs and DTVs down right arm. Since then I’ve been at the Mayo Clinic, and finally got a diagnosis in February. I have Venous Thoracic Outlet Syndrome on the right side....which stumped everyone because I’m very small and generally more muscular athletic people get VTOS.
I had rib removal surgery along with Peculiar Minor surgery in March. Unfortunately my subclavian and axillary veins on the right were so damaged that even with the surgery my condition remains the same...Swelling when I lift my arm or do any activities and all the other lovely perks that go along with tos.
Just had an ultrasound done last week no improvement since February.
I’m on Blood thinners but unfortunately now my left internal jugular vein is getting stenosis. Has anyone had VTOS and ended up with issues on the other side as well??
Won’t see my interventional Radiologist until August 9th.
If anyone has experience this I’d be so great full for your story...it’s going to be a long couple weeks now that I know my I’m developing stenosis on the left side as well.
...... This disease SUCKS!!!!!!!!
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