hi my mum has a avm she has many sezuires grandmal to ones where she talks to her self, she had glue put on it ten years ago and was told she would have a 10 year run, now she has lupas and has a blood clot on her lung the docs have said she will be ok on the blood thinner but im worried, i can tell when my mum get worse as she has slight learning difficultys but when i know her avm is causing a strain she will forget words and forget how to spell simple words like cat etc.
any help would be wonderful i still dont know how to use the site so please bear with me :)
I don't know about the blood thinner. I would check with her AVM Dr. on that. As far as her other problems from the AVM - I'm very familiar with those. I often have the same difficulties. I would suggest that she gets a lot of rest. That's the only thing that helps me. And NO caffeine. That can makes it worst. The forgetting words and misspelling the simple ones, that's how my friends can tell that I'm having a rough day too. They are the ones who tell me it's time for me to rest. If she is not on any seizure med, she may want to look into it. That could help. It's worth a try.
Ben
I did a search on here for you…
http://www.avmsurvivors.org/main/search/search?q=Warfarin
There might be some info there to help you!
looloo: I would be careful with Warfarin/blood thinners combined with AVM.
I had a hemorrhage during embolization most likely because of the blood thinner they gave me to get the glue in the right place. That is the explenation I was given from the radiologist and neurosurgeon afterwards...
When this is said, each case is unique and so on...
Talk to the doctors about your worries!
Many thoughts from Hanne xxx
Hi, I have an AVM and VM and I am on Blood thinners (Warfarin/Coumadin) for the rest of my life. A few years back after having several embolizations I developed two blot clots on the femoral vein leading back to my heart; a portion of one broke free and I actually survived a pulmanary embolism which was very scarey. They checked my blood and discovered I have a clotting disorederd called "Lupus Anticoagulant" which is apprently I have had for some time now and did not know. Anyway, I have been on blood thinners since and my doctor monitors it closely and often just because of the AVM. I have small littel bleeds which I can control from various places along my face, chin and from inside my mouth so they work at keeping me on the low side of my Warfarin/Coumadin therapudic range. It is not easy but manageable and I really do not have a choice but to take it or else risk developing more clots!
v/r
Steve