Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Old 01-29-2014, 11:18 PM #1
Batastj Batastj is offline
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Default My tos dilema

Well where do I begin. Six years ago had a blue arm from fishing a few days before hand. I went to the hospital. They said it was a pulled muscle and go see ur doctor. Well I did and he sent to another who sent me to another who sent me to the ER. First removed the clot, then removed the rib. All good while in recovery but then the sub Calvin vein snapped shut so went under again for a stent. No big deal but those darn tubes through the ribs because the cavity collapses really hurt. Nine days before discharged.

All was good for a few years then I had another doctor (not my primary surgeon) just confirm there was not another clot as my shoulder was hurting. No clot but twenty minutes after the venogram I through a clot. Back to my doctor and two more stents for a five day stay at the hospital. Things were good for a year until I went down a huge slide. I held my arms out to slow my speed at the bottom of the water slide and guess what I fractured the stents and another clot forms. Now I am back in the hospital for another three days. Couple more stents. Few months later there is a narrowing of the stent. Just two days. Then a year go by and for some reason (I think the dry heaves from drinking too much) and another clot. Back in for a stretch of the stents. Been about three months now and seems ok. My question is if the stent keeps featuring what else can I do.
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Old 01-30-2014, 12:45 PM #2
curby curby is offline
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Quote:
Originally Posted by Batastj View Post
Well where do I begin. Six years ago had a blue arm from fishing a few days before hand. I went to the hospital. They said it was a pulled muscle and go see ur doctor. Well I did and he sent to another who sent me to another who sent me to the ER. First removed the clot, then removed the rib. All good while in recovery but then the sub Calvin vein snapped shut so went under again for a stent. No big deal but those darn tubes through the ribs because the cavity collapses really hurt. Nine days before discharged.

All was good for a few years then I had another doctor (not my primary surgeon) just confirm there was not another clot as my shoulder was hurting. No clot but twenty minutes after the venogram I through a clot. Back to my doctor and two more stents for a five day stay at the hospital. Things were good for a year until I went down a huge slide. I held my arms out to slow my speed at the bottom of the water slide and guess what I fractured the stents and another clot forms. Now I am back in the hospital for another three days. Couple more stents. Few months later there is a narrowing of the stent. Just two days. Then a year go by and for some reason (I think the dry heaves from drinking too much) and another clot. Back in for a stretch of the stents. Been about three months now and seems ok. My question is if the stent keeps featuring what else can I do.
There are a lot of links to information about TOS, including the vascular types and treatment protocols (sticky threads at top of list). You can try using the search box too. The links have been very helpful in my quest to learn more about my son's TOS.

What does your current doc say can be done if the stents keep failing? Have you sought other opinions from other doctors?
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Old 01-30-2014, 10:21 PM #3
Anne4tos Anne4tos is offline
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Who are you seeing for care? I'd check out the list of TOS experts and see if there is one close to you. If not, you may have to travel.

I'm not an expert, but in my understanding, stents are usually not used for the exact reason yours are failing. There is to much movement, motion, bending and twisting in the area to support a stent.

Sorry you have been through so much.
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