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AVM Survivors Network

Disability?


#1

Hi - long time lurker, very rare poster. I’m also rare because my AVM is in my left neck not my brain. First diagnosed in 1978, treated in 1978, 1986 and 2009. In 2009, the treatment damaged the nerve that controls my left diaphragm. The AVM also damaged the hypoglossal nerve for the left side of my tongue.

Consequently, I speak with a lisp/slur and get out of breath significantly easier than most people. I’m also not “allowed” to do any major cardiovascular exercise or work due to the possiblity of it expanding and forcing more problems.

In 2014, I lost my job working in fundraising for the orphanage we adopted our two youngest children from. Since then, I’ve had a couple of temporary and part time jobs but have gotten turned down or passed over for at least 100 positions that I know I could do. Why? I think it’s two reasons - I have a speech impediment due to the nerve damage and consequently it impacts my presentability for positions of communications, relations, fundraising etc. Also, I can’t do many jobs because they require significant cardio exercise. I’m also starting to develop tremors in both hands which I believe are also due to the AVM - thus typing jobs/writing jobs are harder to get and do than they were 5 years ago

So, my question - how do you prove disability in a situation like this? It would really help financially if I was making more than $300 a week in a part time job. Any input, any advice would be greatly appreciated.

What options are out there? What do I need to know? Thanks

Tom V


#2

First apply at your local social security office. You will be turned downed, that’s just how it works. The lawyers have to get their cut. Then see a disability lawyer, if he thinks you have a case they’ll take it for about 1/3 of your back pay. After that get all of your medical records and see all of your doctors, the bigger mountain of paperwork the better. Then a hearing with a judge will determine if you’re eligible. Good luck.


#3

Hi Tom. I would suggest going to/through your local congressional office. They offer no charge legal help and will back you in the application process. You’ll have to sign releases to let them have full access to your medical records and to send in correspondence on your behalf. I did this and it wasn’t easier. I was denied twice and even with them backing me I was still I was denied. It was because of my age. With the congressional office though my hearing was fast-tracked and I got the approval at my hearing and didn’t have to wait. I hope this helps somehow. And best to you.


#4

Definitely apply. Get your medical records and talk to your doctors to make sure they are on the same page so if they are asked to fill out anything they are aware you are applying and will support your claim. - I was approved years ago but I had a massive stroke then got my avm-
You have to have worked for at least 10 years to qualify for SSDI less for SSI-
My sister who has different issues was denied and she just had her court case- where she went by her self and she was approved and got back pay from June of 2014- Good luck-