3 craniotomies?

Hi everybody,

My daughter was an average kid until just before her seventh birthday. A previously undiagnosed AVM hemorrhaged and nearly took her life. Just as we were rebuilding our lives, we found out she had a residual AVM. Now this spring, we find out that there is still more AVM in there. As much as I don’t want her to suffer through another craniotomy, I want her to be able to move on with her life and enjoy being a 9-year-old. Doc is debating between radiosurgery or a third craniotomy. Have any of you needed three craniotomies? I don’t like surgery idea either, but we want to be done with this part and move on to find our new post-AVM lives.


Hi Tina. I know 2 people on here who have numerous craniotomies. I will send you a message with their names. It might be impolite just to post their names on an open forum. I will be praying for you and your daughter.

Dear Tina, my son had two craniotmies. I know how hard they are but the idea of losing our child is a nightmare.
I read your daughter developed a kind of non-epiletic seizures. Can you tell me more about that please? My son startes seizures (small ones) 14 moths after his second craniotomy. It was because some scar tissue in his brain probably because of the bleed. His doctor wants to operate him again to remove the scar, again very scary stuff. Lots of love. Erica