update social security and chiari with its own category- long

[Guest guest]

Ok I have found some interesting information that I never knew...

some of you may but I am going to pass on anyway.

1. When you put in for social security they just pull the records of

the doctors, hospitals, clinics, etc that you tell them...they then

make a determination from this information on whether you are totally

disabled..

Total disabled means you cannot work at anything for any time

Besides this information they may also send you to their own doctor

or psychiatrist. I was told something like 95% of first claims get

turned down

I can believe this when you are having someone look at medical

records on conditions and they are making a determination based

on " functionality information "

They never ask your doctor to fill out a functionality form which

could answer this very quickly.

2. Your decision is made within your state. So this now has made a

great deal of sense to me when some of you have written and been

approved the first time while others are having to go to the judge

and beyond.

3. You are more likely to be approved if you have a mental condition -

ie depression to the extent it interferes and makes you unable to

work at anything at any time and ie bipolar...

Now I know some of us have been given the diagnosis of bipolar but we

are not bipolar but if it helps us get social security and medicare

for help with chiari...I suggest you keep the title and the diagnosis.

4. I am still attempting to get chiari as its own category.

Syringomyelia has its own category though I believe the standards are

quite high for approval of disability.

Suggestions based on what I have learned:

a. Get a doctor you trust to do a functionality form on you to go the

initial determination...there is a link on our website to a regular

one and one on chiari. They need to make sure it shows you cannot

work at anything at any time. Also follow the suggestions on our

website.

b. Push for documentation of any mental health issues since this is

even more likely to get covered than chiari by itself.

c. Try to find someone from your own state that got approved and

discuss what they sent in etc..

d. If you can afford it hire one of the social security attorneys

from the beginning...as I understand they take 1/2 of what you would

receive from the time you apply until you receive benefits up to a

max amount. If they are more likely to get you the benefits the

better AND since you have to wait 2 years for medicare..the sooner

the better!

e. Something not just for social security but I have all of my

doctors write ups and test results mailed to my family or pcp...she

then knows exactly what each doctor finds and what the plan is...but

this also has made it easier for her to see what condition I was in.

I get no money benefits because I did not have the quarters in the

last 10 years, but I am continuing to try to get benefits especially

medicare AND I am bound and determined to not let other chiari

patients down.

I have been shocked by all of my conditions, the medications I am on

and their effects AND the write up by the social security doctors own

findings that I was totally disabled...that social security still

found that I could work!!!

If you would like to help me with getting chiari as its own category

or have been approved in Ohio I would love to hear from you privately.

Kathy

trifecta ( all surgeries)

multiple other conditions