September 2011 Update

So as some of you know I applied in May for social security to receive the insurance and help pay my expenses while awaiting for my surgery. However, I received in mail yesterday a denial letter. I have a lawyer that will help me appeal on Monday. I knew they most likely would deny me but I was hoping that when they recognized the AVM they would see the seriousness of me getting it treated and the long term treatment and repeat angiograms and different things needed when dealing with this condition. but they said none of my headaches or vision changes or bruit is disturbing enough to warrant a disability according to them. literally they said that if i was blind i could receive the benefits. however, my avm is pressing against my optic nerves and if it was to rupture i WOULD be blind. go figure. but i am waiting to hear from my neurologist to see if he can talk to dr. spetzler and see if there is anything i can do to get surgery done despite lack of insurance. i understand that is most likely not going to happen but a girl can dream. lol. i am hoping he says yes. but either way i am trying to remain positive despite not feeling very positive at the moment. gotta love the way the system works. i have a rare brain disorder and no insurance to treat it. what to do? state says because i dont have a bunch of kids running around that i cant pay to take care of i dont qualify for state insurance or medicaid. I live in tenn. When speaking with Arizona they say that if I was a resident there they would be able to qualify me for certain programs. but how can i get there with no money for travel expenses, or a way to move? this is crazy.

Hi Patrice. From what I read on here almost everyone gets denied the first time for Social Security. I am glad you have a lawyer that will certainly help matters. Yes…we live in a crazy world. I am still praying for you and thanks for the update!

I’m so sorry you got denied, but am relieved you have an attorney to help you with this. Don’t give up!
You might also want to write your congressman & let him or her know about your needs for getting treatment.
Take care & hang in there,

I’m so sorry to hear that Patrice! I know next to nothing about health care in the US, but I really hope your appeal is successful! Do keep us updated on how you’re doing, and take care!