Life Expectancy

All AVMs are so different… Mine just discovered in February, very deep in right side of my brain @ 36 years of age. I was diagnosed with Heart problems 2 years ago & have Since been cleared by Cardioligist with no heart problems. It was my AVM & Chiari1 causing heart problems. i have daily numbness of my limbs, mouth when I chew & newest symptom my nose & upper lip goes numb randomly.
I have so many complications that surgery is not even an option at this point as they can not figure out how to get into my brain to do embolization surgeries & a craniotomy would probably kill me due to location of my AVM. My best option & possible hope at this point is Gamma knife surgery, but I’m still waiting for the team of 7 to contact me back to see if they will be able to shrink my AVM.
I’m grateful I live in Canada where my health care is paid for. Reading some stories on here about waiting for MRIs are so sad.
My Neurologist is so amazing that I am in contact with him weekly & receive answers back to my questions immediately because my case is so unique & critical! So to sum it up… Some of us can’t just have surgery no matter what the odds are!! If I have a bleed, ill have no option. I just pray the bleed doesn’t require a craniotomy… My chances of not being paralyzed down my left side & speaking again are not very high.

Well the AVM I had was considered inoperable so early on the best option/course of action seemed to be to just monitor it. Back then I used to think about it a lot too.

you know its kinda funny you asked this question when I was looking all over the intertnet for it last week. and I finally came back here to say im still alive. driving my wife crazy thinking about it, Im 40 and I had a cavernous malformation rupture in my brainstem last October and still have a nother one in white matter of my frontal lobe they think its genetic so I was trippin like im going to have to go thru this my whole life. I don't feel up it sometimes. I guess what I can say is I was told like 2-4% per year after 40 for me its gonna grow back. etc. like grass. how some faster some slower. could take 20 years again theres no statistic what matters is keep going for your annual mri so they can gauge it. maybe avm is different I don't know. same family I guess. for they told me I always had it and now I just know about it. hope everything works out for you...

troy

hey fishbowl, just read about your situation. sounds like a tuff spot to be in. I was in that same situation last year. had 3 neurosurgeons tell me they cant operate on mine that was in my brainstem area specifically the pons region. controls all the base functions. I went to UCSF Dr. Lawton specifically successfully removed mine. I was considering GK too. maybe works for avm not ccm but he is the best in the country and specializes in avm's maybe talk to him?? he saved my life. after the bleed I just have right side numbness and slight palsey right eye..

good luck to you :)

Monday Dr said mine is inoperable as well, second Dr to say so and this one explained my vm is located too close to functions. I would be q vegetables so I’m not too keen on a third person to say this again to me at least as long as I don’t continue getting worse. I’m just glad these drs aren’t saying yeah ill get! And running into the brain, that’s so irresponsible. While it is frustrating being told to live with it, even with all the pain, the alternative is Not an option! God made me stubborn for a reason, maybe this is why! :slight_smile: