Greetings everyone! The big day is nearly here. My daughter’s rare complex craniotomy surgery is next week, Tuesday June 2 at UCLA w/Dr Neil Martin. We flew to UCLA last week for pre-op, impressive place, now home waiting to go back. We’ve been told her surgery will be the 8th time this particular type of rare AVM surgery has been attempted, 5 good outcomes out of 7 attempts. (Although too shocked to ask what “good” meant). We are trying to remain calm & positive but it is hard to push down overwheming grief & distress this is happened to her & with no idea what is going to happen.
I’m postive & confident & tell her that everything will be fine when I see/talk to her. But I’m so distraught inside its hard to function (somehow I plod along). She’s in fairly good spirits, starting to get nervous but ready to have this over to get on with her newlywed life/plans. Thanks for the kind words of support, it’s been great to talk to a few people who have experience w/AVM & some have fairly good outcomes! As you know most people just glaze over when you try to share with them what is going on, plus, what the heck can people say to you anyway; its just all so awful. I’ve been shy about sharing, I know I have to reach more so I don’t feel so alone. I’ve been lurking around the site reading stories & it’s been helpful to prepare for possibilities. Also I’d like to thank the AVM Survivor Website team for all their efforts in maintaining this site. How wonderful it was to find this & not feel so alone in this journey. I’ll share more of the extraordinary surgery details afterward if anyone is interested.
Warm regards, Lisa, SF Bay