My name is Debby and although I’ve been following this platform for years I’ve never written or post or interacted with anyone.
I’m 38 yrs old and have AVM of the lower mandible (jaw) and chin. Probably a reason I’ve never really talked about it as I see it’s more common for people to have in their brain/head.
I was diagnosed at age 8, and back then they didn’t know much about it or even know how to treat it. Thankfully, we are in an age where medical technology has advanced. Over the last 30yrs there have been periods of ongoing treatment and also periods of remission.
Most recently, within the last 5 years, it’s gotten worse and I find myself having over a dozen procedures a year. It has ranged from steroid shots, to angiograms, to embolizations and even corterization.
They have gotten to the point where there’s not much left they can do.
My question is has anyone been successful at going on disability for AVM?
Having AVM I’m my mouth/chin means I’m constantly and randomly bleeding profusely. (As in someone turned on a faucet at full force) I also am in/out of the hospital constantly and we all know recovery takes a while. I’ve applied 4 or 5 times and they keep denying me stating that AVM isn’t considered a disability as I am able to return to work.
Anyone have any advice or success with this?