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AVM Survivors Network

I’m new here

Hey Y’all,

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?
TIA

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I’m sorry that you are having all of your complications with the AVM. My husband has had experience in applying for disability and it is certainly a time that you need the assistance it is meant to provide. They don’t make it easy that is for sure. After multiple denials, we ended up hiring a lawyer. With his assistance, we were able to get his disability application approved. No payment needed unless they win your case. Retroactive disability payments, and a true life saver. Worth a call. Help is out there.

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@Debby hello thanks for sharing your story.
Social Security Disability has gotten tougher
You need to make sure you drs are on board with you not working and that’s it’s documented in your medical records.
I first had a rare stroke due to blood clots in my brain then bout 7 months later they found my AVM then I had another stroke.
My work disability actually hired a lawyer to apply for SSDI cause I guess it was cheaper for them…even though I had paid for over 20 years for Ltd , but then last year SSDI said I was fine and kicked me off so I hired a lawyer and fought and won my case I was 50 which for some reason they say it’s easier.
I also had my pain neurologist fill out one of their forms that showed my limitations.
I also have been diagnosed with centralized pain syndrome and a few other things.
I am also like you they can’t do anything else for AVM.
Angela

Debby,

I can’t tell you anything about disability benefits because I’m in the UK but I can tell you you are not alone. We have a decent number of people in the @Facial AVM group and I’m pretty sure I’ve read of a couple with the AVM in the mandible, maybe more. Mandible might actually be quite common among facial AVMers. So while the majority of folk here have a brain AVM there are sizeable groups of people with AVMs elsewhere and I created the groups (perhaps 2 years ago) with helping people in those more unique AVM areas find each other more easily.

I hope one or two might see this post and share a bit of experience with you.

From everything I’ve read, facial AVMs seem to be real rotters to get under control, perhaps not very controllable really.

Wish you the best,

Richard

Thank you so much Richard, that’s already a tremendous help!

Debby

I’m 31 and have a VM on my scalp/cheek/and submandible. I’ve never done disability, but have you looked into long term intermittent FMLA?. It would at least protect your job and allow for you to be off for issues related to your AVM.

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Good luck & May God be w/YOU to help giving you ANSWERS!