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Have TOS, had first rib resection, Still suffer from brain fog etc
My son, a 24 year old division I football player was diagnosed with TOS in March after coughing up blood with DVT and PEs. After two thrombectomies, he had first rib resection, developed hematomas after surgery, had two more surgeries, kidney failure (which he has recovered from), and he almost died. Currently has been on blood thinners since March. Had one more venogram in June. There is blood flow in vessel and a lot of collateral vessels. BUT, he continues to suffer from brain fog, dizziness, tinnitus, severe eye floaters, and agitation. We have sought help from vascular surgeon who says he is better, neurologists at Univ of Utah, who don't know what is going on. He is at his wits end and he's a tough guy. After researching, we think he might have arterial TOS, but when we bring that up, Drs don't know what we are talking about. Can you direct us to a hospital or Dr. anywhere in the country who can help my son?
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TOS?????????
Thoracic Outlet Syndrome
Is is TOS thought to be from injuries associated with football or a congenital issue. Regardless, TOS shouldn’t cause brain symptoms to my knowledge, or is the thought there there’s an underlying diagnosis that predisposed him to TOS and brain blood vessel disease?
Has ne suffered many concussions?
The answer would be both. His body probably had a narrow area in his thoracic outlet area and then he got very muscular for football, which essentially pressed the vessels shut and he developed a DVT in his shoulder and then PEs. He has no underlying issues which would cause blood clots or vascular disease. He's been tested for all of those. He only had one concussion in high school in 2018. And it was fairly mild.
I'm wondering if it could be micro emboli in his brain from the blood clots (not shown on any MRI or CT.) Or if it could be several different things like damage to the inner ear from blood clots, and maybe like PTSD from almost dying? But he had those same symptoms before the surgery.
I would definitely request (or do a self referral) to one of the bigger teaching/learning Hospitals. Tons on the east coast. ie Mayo, John Hopkins, Penn, Duke and the Research Triangle, Cleveland Clinic just to mention a few. Obviously, in reviewing his symptoms, something is going on. Probably would benefit from a multi disciplinary medical team to do a complete and thorough work-up
Thanks