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Does anyone get Grossly Swollen with there BCS?

This is how it all started with the swelling in 2009. Four weekends in a row they'd keep me three days and release me after getting the swelling down. The fourth time ended up 2 months in the hospital where I had clots they had no clue what was wrong with me but called in a very smart vascular surgeon who discovered I had BCS. I was doing pretty well and my BCS had been well managed moved to TX in 2013 but 3 months ago my problems started returning and I saw a GI Dr who became part of my new team of physicians and he told me there is no sign of BCS. What?! Upon coming to TX I have come across many Dr who do not even know what Budd Chiari is. Any hoo. I am grossly swollen and very fatigue and have been for the last five days I am concerned has anyone experienced this and what is as done.
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620923 tn?1452915648
Hi and welcome to the Chiari Malformation forum.

Budd Chiari and Chiari Malformation are two different conditions, your's is a liver issue while the one we discus here is a brain related condition.....You may want to check out a Liver Conditions/disease forum for others with your same BCS.
I would like to add, we do have a similar issue with Drs not really knowing what our Chiari is or how it affects us and or how to treat us effectively.
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Thanks selma5
how not to be dumb but i never heard of budd chiari
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