Please help, I don’t know what to do. I was in a difficult situation for almost 5 months, since we discovered my daughter’s AVM incidentally
I have sent all images - MRI and DSA - to several doctors/hospitals to get opinions. They are different, quite different. At last, two USA hospitals, very well-known, advised the same treatment plan. We are now having 2 options:
Wait and watch: low risk of hemorrhage - you said about 3% of hemorrhage/year, in children, this rate is 4%. And 21% of hemorrhage is dead, others complications applied to the rest. We don’t know it will be bleeding tomorrow or the day after. The problem here is we are not living in USA, if its bleeding, we have to take surgery locally, what I don’t trust.
Embolization and resection surgery: high rate of complete cure and high risk of left vision loss almost 100%. Right vision, almost 100% kept. Other complications, as normal. if we decide now, we can fly to USA to take the surgery.
If it was my case, I would choose the first one. But this is for my daughter, what should I decide? Surgery, anyone took surgery for an unruptured AVM, have come back to normal?
Hello and Welcome to the group. I am so sorry that your daughrwe has to go through this and for you! This site is super supportive-
As someone who first had a massive stroke unrelated to my avm but that stroke later collapsed a major vein in my brain and my body tried to fix it with a DAVF- I had to relearn how to walk talk etc. while I was recovering they found the DAVF and I could not sleep and I wanted it out! I wanted them to cut it out.
They first did an angiogram and embolism but could not get all of it and I was going to gave to a crainotomy but during the second angio they found it had sealed itself( which is rare) - For me if I were your daughter I would want the surgery. I dont know how old she is. My vision got a little worse but not much but I cant really see to read first thing in the am but as I wake up it gets better.
For me its like having a bomb in my brain - I want to ski and ice skate but family has a shit fit about it, which I get. It can just keep growing and then it can become an issue where they cant operate. There is danger in any surgery and you of course have found the experts - I always ask them how many people have died or had a stroke etc under your care.
Being both a patient and a care giver I find it way more stressful to be a care giver. My sister got the flesh eating virus a 1 year after my DAVF- -
I’m sorry you are going through this! They found mine after 2 ruptures and it did mess with the vision in my left eye but it eventually returned I was 36 when they found it and had been having migraines sharp pain and chronic fluid on the brain that they could not figure out what was happening until I had the bleeds they showed up on an MRI and the angiogram showed the avm at that point my only option was a craniotomy so I did it very scared but I came through pretty good and after a couple years pretty much back to normal so my advice would be to go for the surgery my opinion only mine went untreated for 36 yrs and I had multitudes of problems that they could never cure and some irreversible if she is young you my be doing her a favor by correcting it now vs later
Thank you, Angela and Beverly. My daughter is 13 years old. I am just afraid if she takes resection surgery, beside losing a left vision, she will get more neurological deficits. Your messages wake me up from a jungle of thoughts. Your share and care make me stronger. Great appreciate, Angela and Beverly. All the very best to you!
Hope
I had ruptured AVM and have not come back to normal. I think most people that have a rupture deal with that problem. I can’t tell u what to do but u need to know what may happen if a rupture occurs. I hope everything goes well and I WILL be praying for u.
Hope17
What does your daughter want to do? Does she understand what is going with her avm?
I did respond to your private message you should see a number in the upper right hand part of the screen near your profile icon.
Please let us know what you decide