Hi Guys, am new to this site and very grateful I came across it. I recently found out I have an avm close to my pons. I am 33 and a mom to 2 Little kids. I’m still trying to get used to knowing that it’s there and the risk it poses. My avm is about half a cm and I’m asymptomatic,I have been getting headaches with extreme exercise and after scanning was picked up. I’m not allowed to exercise anymore which doesn’t help. My doctor says we should scan every 6 months and should do nothing about it in the mean time and just carry on living like normal (as if that’s so easy to do). How old were you guys when you bled and what we’re the complications from it and what factors made you decide on wet her to treat or leave the avm alone? Any advise is appreciated.
Welcome to the group Sandy. I was 38 when I had my bleed. My 2 girls were young at the time, 5 and 8. I did not know I had my AVM before my rupture. I did not have to make the decision of whether to treat or not. My husband did. He was told by my surgeon that not only was another bleed likely but that another bleed was imminent. I have many deficits because of my bleed and as a result and no longer able to work.
The best advice I can give you is to seek the opinion of several doctors who specialize in the treatment of AVMs. There are so many factors that go into making the decision to treat or not and you need to be as educated as you can in ALL of the options available to you. Please seek out other doctors in your area that may be knowledgable in AVM. Best wishes to you.
When they first found mine, it was big. They started scheduling me for surgery basically right away. Before surgery I had another scan to check on it, and it had gotten bigger. From what I understand, it isn't normal for them to develop as fast as mine did. And I was really really lucky. The day I was supposed to have my embolization, my AVM perforated and I had my bleed.
Your doc probably doesn't want to put you through surgery (because with surgery there are always risks)unless the AVM is bigger. That's probably why he wants you to get a scan every 6 months. I still get scanned once a year to make sure nothing new is showing up.