Anyone have CVMS(cavernous veneus)?There are 11 in my family that do..Sharing

[uzingmybrain]

knowledge helps.? in the past 3 years 8 members of my family have needed brain surgery to remove ones that have bled. 5 more have been tested and also carry the gene. it's so hard to tell you kids that they might have them too.

[Miss Christeenie]

I have cavernous angioma on the brain. They have found 2 one had burst at age 23 and was removed. Yes I had a daughter before knowing the effects now she has a 50% chance of inheriting the disease.

First was in the occipital lobe second is in the frontal. I have had the occipital removed through Craniotomy but had no luck with stopping seizures every month. It has greatly affected my life. My daughter will need MRI as soon as she can sit still (she is only 2).

Funny how neither parent has had problems. I warned them to get tested they are just too worried that they have them too. My brother is also either asymptomatic or they have never bled.

Sad isn't it? Guess we just have to fight a lil harder than the everyday average person. You are not alone!