Thoracic Outlet Syndrome - 12mths post op

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i had a sudden onset of swelling accompanied by 5 clots in my right arm and upper chest - i was diagnosed in the ER with paget-shroedder syndrome/venous TOS.

i had a thrombectomy to remove 4 of the clots, one was stuck under my collar bone. i had my first rib removed to access that, i also needed my subclavian vein patched as it has split, the rib removal also caused a pneumothorax - fun!

painful and unexpected

a year later i am having issues in my esophagus - lower neck, anyone experience this post op? having a contrast CT this week, ive been uncomfortable for almost 4 months with burning/lump feeling, ENT thinks it may be related to TOS surgery.

interested to hear anyone elses experience

thanks 😃

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    Hi Melly,

    My daughter just got diagnosed with this and it took 2 years of complaining with shoulder and back aches, going to chiropractor, 2 years of going to the ER. and then refusing to leave the ER until they gave her a diagnosis. The diagnosis was a huge blood clot in her arm and one in each lung. Then they tried to say she had a blood disorder. Now 7 months later she finally got the diagnosis for having an extra rib. That's it. there was no mention of this disease. I'm so glad I found this article. And appreciate you sharing your experience. Any updates on your situation? Thanks.

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