I am not sure why surgery wasn't the first recommendation in my case, but I'm not unhappy with that because there was no one here probably competent enough to perform it anyway. I think with this disease (and other rare diseases) the medical advice depends on where you land. I live in a more populated area then you but there's a lot of ignorance about it here too. I ended up switching primary docs because one was so unresponsive. Thank God the 2nd one sent me to a specialist 90 miles away, 6 mos after my clot. It just took time. And now I'm waiting for authorizations and questions to be answered. No one is suggesting to me that I go off blood thinners without a surgery, so that's kind of what my choice boils down to.
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Originally Posted by DinaRR
I was taken off warfarin 5 days post op. The specialist said he only needed to remove part of the rib. He also said by the amount of scarring tissue I was probably born with PS Syndrome and aggravated it when my collar bone was hit.
I live in a 9000 population town and have not been to my regular Dr. due to when I first went in with the symptoms they had no clue what I had and was going to leave me on warfarin the rest of my life as a cure. I'm the one that pushed to see a specialist.
My question to you is why haven't you had the surgery yet? The specialist I saw told me I had to have the surgery ASAP due to nerve and tissue damage that was happening. two days of seeing him I had the balloon done to open up the vein and two weeks later, time allowed for healing, I had the partial rib removed. Not saying my specialist is the best, but something to think about.
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