Untreatable Brain AVM and Pregnancy - Brain & Nervous System Disorders Message Board

Benner15 · 10-06-2003, 02:45 PM

I am a 31 year old female and about a year and a half ago I was diagnosed with a large brain AVM. After an MRI,Angiogram and an attempt at treatment I was told that as of now my AVM is not treateble. The risks to me far outway the risk of leaving it there. I have been struggling with this for awhile now,I was told to live my life as normal as posible with a few limitaions. I struggle the most with the fact that I was told it is dangerous and strongly recommended that I don't get pregnant.I am wondering if anyone else out there has any similiar experience to share. I am really struggling with this as now everyone around seems to be pregnant and I find myself in tears constantly. Any information anyone has would be most appreciated.
Thanks

cstiffey2003 · 10-06-2003, 10:08 PM

hello, i am sorry to hear about you codition. well there are three ways of treating this one is embolization, there is gamma knife and or sergery what treatment types have you already had if any. i think the reasion they say not to get pregnaunt is because it will increase your blood pressure and right now they donot want that because it could rupture your blood vessells. i think maybe you should get another opinion on what kind of treatment could be good for you. you said that treatment would not help you but there is not a single thing in this would that cannot be treated you just have to find the right dr. because for one thing you are not old so it can not be your age. maybe you can tell me a little more about your self and your condition.

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christina

themalgirl · 11-18-2004, 03:50 PM

Hello....I am sorry to hear about your AVM. I am in a somewhat similar situation and I'm wondering if you've learned any new information or recieved a second opinion since posting this note? I have a large AVM as well, however, mine is in my tongue (very strange and not as severe as yours I'm sure). I've just completed my 5th surgery (angiogram embolization and sclerotherapy). I am told that unless I have a full glossectomy (cut off my entire tongue), I will never be AVM free, and even then there is no guarantee. My dr also told me on numerous occasions that I should never get pregnant because it would be too risky for both myself and possibly the child too...and could cause terrible complications and possibly even heart failure. It is really bothering me this time because I am married 2 years now and starting to consider having a child. She was very adamant about it though. Just wondering if you were able to get any other info as I am trying to research my options also. any feedback is helpful. Thanks!