Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Chiari and disability

Has anyone applied for disability and won or are they giving you the run around because they think its just headaches.

Replies

deleted_user
deleted_user

I got the run around for a long time until I hired a lawyer bes thing I ever did took me three years to get my disabilty but they back pay came and I had a most wonderful christmas with my kids for the first time. Keep at it and dont give up! Good luck and best wishes!
deleted_user
deleted_user

I have been trying for 4 years and have three lawyers and here in Michigan they keep denying me based on the reasoning there are no guide lines for this disease. They feel like I still can work, I have CM/SM and Fibromyeliga. I have a BS in Biology and worked 25 years in the hospital lab. I am unable to do my job , I was fired from my last job 5 years ago before I was diagnoised because of attendance problems.I am still trying to get it, so don't give up. I truly believe that help is on the way soon.
deleted_user
deleted_user

Do you have syringomyelia along with Chiari? Social Security has Syringomyelia in their Blue book.
deleted_user
deleted_user

I have been on disability because of the Chiari with Syrinx for 4 years or so. It took me almost as long to get it. I got assistance from a free legal assistance place.

Social Security will try to say that you're not disabled. That's their job. But, it's not necessarily the malformation itself or even the symptoms that makes you eligible, but the fact that any work you do makes your condition worse.

The real question is not "Can you work?", but "Can you continue to work?"
deleted_user
deleted_user

i have been battling disability for 4 years also. I go to court again in June. I have a wonderful lawyer. I hope all goes well, my advice is do not give up. That is exactly what they want you to do. Hang in there
deleted_user
deleted_user

I was awarded first time . If you have Syringomyelia with the chiari , you need to list it as your only illness because it is listed in SS and chiari is not.
deleted_user
deleted_user

i have chiari with hydrocephalus, but they are nuts, the social security is around the corner and they told me they dont have my appeal papers!! so i got to start all over again.
deleted_user
deleted_user

Man, disability has "lost" my papers so many times now. It's funny also how all of their paperwork makes it to my house except for denials....
deleted_user
deleted_user

The first time I applied my denial got here while I was still in the hospital from the surgery. So I wasn't in any shape to appeal. This time they sent me papers to fill out and the next day they sent me a denial and then 2 days later they sent me a letter telling me they can't process my request until I fill out the papers and send them back in. So the are real good about the run around.
deleted_user
deleted_user

I won on the first time, did not even need a lawyer. I was diagnosed last year and waited until February to apply, I also have Pseudotumor Cerebri and have failed on all the medications that have been tried.

My first check was deposited on Friday for SSI (back pay for 3 months) and I was awarded Disability backdating to the day my shunt failed (or I called the doc) back in 2007...my first disability check will be deposited right before my birthday.
deleted_user
deleted_user

I was denied the by SS and I got a lawyer who used to be a disability judge. I was awarded my disability at my hearing due to the extreme headaches that I have and that I had had surgery to correct it. I was unable to do my job at the post office. Just keep trying and eventually you will win.
deleted_user
deleted_user

Thanks for the vote of confedense. Here over the past few months it feels like I've been getting worse everyday and I get nothing from SSI.
Season
Season

I was awarded ssi almost 2 years ago with a review after 24 months...my worry is them taking it away after the review...anyone else experience a bad review?
Laurie40
Laurie40

how do they calculate how much your monthly social security benefit is? I honestly don't know if I could even live off of it!!
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