Been using this network more than usual lately. Its been nice.
My AVM is a facial AVM and it bleeds pretty regularly through my lower left gums. I get bleeds pretty much every day, mostly little ones though with more significant ones once or twice a week.
Lately its been scaring me though. I know if I called my doctor, he’d probably tell me I was okay with just the little ones. I had embo/bleo done last month in NYC. But… sometimes when I wake up in the middle of a night from a bleed, I just get scared that it’s going to be “the one” that causes me to go downhill (like some have in the past). I’ve never been scared like this before, and I don’t know what to do about it.
I don’t want to call my doctor because 1) I’m tired of operations and 2) he’s one of the top AVM docs and I still feel like my AVM is less significant than other AVMS he treats, or less problematic than it has been for me in the past. I feel silly.
My first bleed was my biggest. O, my avm is located left hemisphere of my head.
About your age then 8 when found. Anyway thought I was gonna die. I puked blood in the sink.Turned
a white sink to red pretty much. My first angio and embol scared me cause I didn’t know what to expect. But after a few I was less scared. That doesn’t mean I got used to the pain of it all. I finally got religion which helped a lot. I won’t say I am never scared no more cause I am human. But since having this prob for so long,I’m early 40s now, it just doesn’t scare me like it used to. My 2 cents worth.
And yeah quite frankly I’m sick of surgery too.
I was diagnosed last June, with an AVN and Aneurysm in the left partial lobe of the brain. I had a tonic clonic seizure, I suffered slight brain damage. I think being scared is only a natural human reaction. I am scared as I am walking around with a ticking time bomb in my head. It is really hard to cope with the fear sometimes, I used to be a fighter and always felt fit and strong. One thing that helps me in times of fear, is trying to get involved wiyh people worse off than I am. Then despite my fears, I realise how lucky I am. I know we have these horrible things, but when you go and see a 6 year old little boy that has never walked, can’t breath properly etc. Having operations, but he can’t talk or use a computer to voice his fears. I feel blessed to be able to come somewhere like this site and say i’m scared.
I wish you well and hope for speedy relief…
If you are really concerned then a second opinion with another doctor wont hurt and at least give you piece of mind… God bless!