As if having an AVM isn’t enough, about the same time I was also diagnosed with another potentially lethal disorder, Marfan Syndrome. (My wife used to call me “the healthiest dying man she knows.”) It is a connective tissue disorder that can arise spontaneously or be inherited. My was apparently spontaneous. To date neither my AVM doctors or my Marfan doctors have seen anything upon which to base a definitive connection. Does anyone in the group also have a diagnosis of Marfan Syndrome? For more info, visit www.marfan.org.
It seems reasonable that a disease which weakens the connective tissue in your aorta could just as easily weaken other vessels in your body. Until, or unless, someone connects all the dots they will remain unrelated. However, if you are a member of both sets, please speak up.
I have always been grateful for living a full, active life in spite of these things. At 58 I have probably outlived the odds, and I still have no intention to give in to them, yet. I plan for tomorrow, even it I might never get there.
Do you still have your AVM or has it been removed and how was your Marfan Syndrome diagnosed? Although I had my AVM removed on 5/22, I've got some bloodwork that is coming back abnormal. I was hoping to be done with all of this. It might just be my body getting back to normal or it could be my body's response to the medication for my seizures. Who knows....
My symptoms were seizures. They ordered an MRI, which found the AVM. It has seen been removed and it is 100% gone. However, my bloodwork from the recheck with my neurologist came back abnormal (RBC, etc). Just curious what that could mean...if it's related to the removed AVM or something completely different.
Hello! Many years later but I’m in the same situation - AVM and suspected Marfans. Part of me thinks there must be a link between the two but at the same time they are both so rare and random that who knows!
There are a handful of people in the forum with Marfan Syndrome, some from a very long time ago and some more recent. I’d suggest that you do a bit of research using the button, note down the names and then start a new conversation and quote people’s @ tag to invite them into the conversation.
This particular conversation is ancient. There are at least a couple of more modern conversations touching upon Marfan that you’d reasonably expect people to still have access to their email address. Going back 11 years I’d say most people have moved email address in that period and won’t have access to see the conversation.
I’m going to close this conversation. Start a new one and invite the people in who you can find talking about Marfan.
button, note down the names and then start a new conversation and quote people’s @ tag to invite them into the conversation.