I’ve read some other threads on this subject but didn’t necessarily find what I was looking for. Maybe on this type of subject there isn’t much to say anyway.
I have an AVM in and around my left mandible. I’m 21 and have had almost 20 procedures since I was 9yrs old. And I’m tired. Its crazy to think that this may very well be what the rest of my life is going to look like. However… I’m also beginning to wonder if it doesn’t have to be this way.
I know most experiences come from those who have an AVM in the brain. However, I’m wondering if anyone out there has a facial AVM or AVM outside of the brain, and has decided to discontinue treatment – or at least stop treatment for a number of years?
I realize this malformation isn’t exactly curable… and maybe withdrawing from bleo injections and/or embolizations could be a gamble for me. Maybe its a chance worth taking. My thoughts are that if I discontinue treatment (either forever, or just for a few years) that my life will be just as uncomfortable/painful as it is now… but my pain level is already through the roof, and I don’t think a fluctuation of that would really make the quality of my life that much different.
I know this isn’t the typical route for those with chronic illness to take, and its a subject that’s not often discussed. Have any of you felt this way (either with brain AVMs or facial AVMs, etc.)?