Just Curious?

I was wondering why one choose surgery given the choice when the risk of re-bleed seems to be so low. My doctor said 10% after the first 6 months and 2-4 % chance after that ??

I wish I could remember the site, but it gives the stats on bleeds with AVMs. It somehow multilples on itself and increases with time. I know with Andrew they said, especially because of his age, it wasn’t if it would bleed again, but when. I would google something about risk percent of bleed with AVM or something like that it might pull something up.

Thanks Janice, I am very concerned about the doctor doing a craniotomy when I am 50 years old. I want to do something less invasive because the odds of bleeding as you are older are not as great. I do believe being perimenopausal and bleeding a lot had something to do with my bleed in the brain that stabilized on it’s own. I tell all doctors six days before the stroke, I had the worst cramps in my life. They were equal to labor pains. Docs look at me as if I said nothing. Hormonal changes in women are always ignored. I’m going to a couple of new docs in the next few weeks, I’m looking for someone that will treat the whole person, not just my AVM.
My mother lives with me and she is paralyzed, I forgot to take care of me.
Janice be good to you too!!!

Peace,
Ameenah

ameenah,
i never had a bleed but had lost my left field vision…things continued to get worse as i began dropping things and dragging my left foot when walking…the avm had stolen the blood supply and oxygen from thses parts of the brain resulting in brain damaged…if i was to leave it…it would have continued to damaged the brain…and eventually i would have ended up in a wheelchair…i also had 3 anurysms which increased my risk of bleeding even more…so in light of all that i felt i really didn’t have much of a choice

Thanks so much Alicia, that makes it really clear to me why you did something.
I am so glad I did not know about the avm when I was younger, it would have changed the life I know today. I usually want to know everything.LOL
I realize now that I’ve been having problems for years that I thought were cause by other things,
I was misdiagnosed for years, 8 to be exact. I’ve had problems with balance and clumsiness all of my life,
prior to being misdiagnosed. I know that I am going to have to do something, but since the stroke, I have been getting better, not myself, I say about 70% me. When I first came home from rehab, I think I was operating at 40 %. I have been home for 9 weeks. I can do more and more every week, this is why I think something less invasive could be done. We’ll see, I have few more docs to see. Thanks so much.

Peace,
Ameena

On a yearly basis the risk of rebleed is small. But if you are 30, expected to live another 50 years, the risk of a bleed during your life is significant and worth the surgery. If you are 75, maybe not worth the risk.

Plus some AVMs cause problems outside of a bleed so should be treated.

You can also get gamma-knife radiation which is non-invasive treatment.

Thanks Ben, I’m 50, my doc said I look 30 though.LOL

I rather have gamma knife, one doc is saying it is too large almost 4 cm original doc is saying almost 2cm
and they are reading the same scan. I go tomorrow 3-17-09 for a new ct scan. I’ll see what happens, both docs should read because I go to the doc that said almost 2cm 3-19-09. I’m going to go to Jefferson as well because they are the GK specialist in Philadelphia. The University Penn doc who ais also a specialist is saying 4cm.

Thanks,
Ameenah