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Hi Sally,

I've had 2 SS hearings both ended in denials. I am waiting for a

decision in my current case.

Take care of you.

Love ya,

Di Steiner :o)

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sallygnann@... wrote:

> Hi everyone,

> I've been hanging out for several years now--found chiari after an auto

accident in 97---went to NY last year for decompression but had TC surgery

instead. Unfortunatley I havent had any improvement to my symptoms. Been off

work 3 years now and trying to get on SSD. After 2 appeals, got an attorney who

basically told me that they wont take my case unless they think they can win

(yah, cause they want my money!). Anywho, went to the hearing today and now I'm

even more stressed than ever. Was told I wont know for 30-60days the results

(cause I dont mind waiting even longer). Obviously my attorney couldnt read the

judge very well so cant even give me a glimmer of hope. The judge didnt even

seem to know what was wrong with me and got more confused while I tried to

explain! I would really like to hear from people who have been through this and

got to the other side ---one way or another. I know there is a alot of people

with chiari out there who have gotten SSD---just need some " hope " at this point!

> Thanks!

> Sally G.

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Sally G. Yes there is hope, there is the other side of the rainbow if one can

look at being on disability in that manner. I fought and won. Took 23 months for

me from the month filed to the day I received the letter from the judge. But in

my case the Chiari was an after thought really. It wasn't determined that I had

chiari until one month before my hearing. I did not have any listed impairment

but the judge ruled that with the cumulative effects of having so many other

things going on, I was worthy...

My daughter on the other hand did win her disability. It took 3 years but I do

believe that because she is only in her 30's age was a factor in how long it

took and how hard she had to fight. Her judge went so far as to order psych

testing at her expense as well as forcing her to see another doctor ( order for

IME) as though her 2 foot thick medical file wasn't enough. Her disability claim

was approved in May and she is now finally getting her monthly check. One plus

side to the length of time is that she automatically became eligible for her

medicare and that helped a lot....

Good luck to you, keep your chin up.... Sending positive vibes and prayers

your way.

Marilyn in Arkansas

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Hi Sally & all,

(I'm replying to all just because I think it might

reassure some folks who are in a similar position to

Sally ((or are soon to be))...)

I completely understand your stress. The process of

applying for--and waiting to hear the decision

about--SSDI is AGONIZING!!!!

I just want to let you know that YES, there is hope.

I applied for and received SSDI the first time around.

It was grueling to go through the process, and very,

VERY stressful, but I made it through, and now I have

Medicare and some regular money coming in every month

that I can count on. My neurologist at the time (who

I don't see anymore), who did my medical evaluation

for my SSDI application and wrote my letters for them,

was not particularly knowledgable about Chiari, and I

felt that he didn't do me any favors by writing fairly

wimpy letters...so I had to make mine all the stronger

to make up for that. Even though I was applying for

disability 4 years after my decompression surgery

failed to improve my symptoms (and I had been forced

to spend almost every hour of those 4 years lying

down), that neurologist wrote that he thought I would

be " fully recovered " and ready to return to full-time

employment within 1 year. So, I have to be

re-evaluated every year by SSDI, rather than every few

years like most people are...but that's ok, because so

far, I've always been re-approved without any trouble

whatsoever. (incidentally, when I asked that

neurologist what he wanted me to DO during that year

that would get me fully recovered, he didn't really

have an answer. He said something about " new

medications coming out every day " and that there was

likely to be one that would work for me approved by

the FDA eventually.)

Anyway, it sounds like you are well past the point of

wanting/needing any advice about how to phrase things

on your application, etc...but if you would like to

talk about things I did that I think might have been

helpful, feel free to email me. (of course, I am NO

expert.) I'm just happy to provide support--and I'll

be sending lots of positive energy your way until your

case goes through successfully!

Oh, and I also want to point out to the group that I

was fairly young (exactly 30) when my SSDI was

approved. So, I'm not sure that being young means

you'll automatically be rejected. :^)

Ginger

--- " sallygnann@... " wrote:

> Hi everyone,

> I've been hanging out for several years now--found

> chiari after an auto accident in 97---went to NY

> last year for decompression but had TC surgery

> instead. ... I know there is a

> alot of people with chiari out there who have gotten

> SSD---just need some " hope " at this point!

> Thanks!

> Sally G.

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

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Hi Sally,

I also procrastinated on my SSDI application and finally did the

application in person in October 2006. I tried to complete the

application online in April 2006 just before my decompression

surgery, but chiarian brain didn't work, so I forgot to hit 'submit'

and then of course recovery.

I went to a psych evaluation, then a physical, and in March 2007 I

found out I was approved. I was really surprised at that move.

I *think* that having all your paperwork in order, specialists on

your side makes a huge difference.

Get a copy of the Residual Function Capacity form from www.asap.org

to get that part rolling, have your NSG/NL complete it. Then it

becomes a permanent part of your medical records. Make sure that SS

receives notice(call your claims rep on that part) and make sure that

you have a medical release for that NSG that completes the paperwork.

Start also with your closest family, friends that have seen the

impact on your relationships. They request that they be short,

succinct and very to the point. Such as, how low they have known you,

how you were before, and how this disability has changed you, and

your relationships with them and others around you. Be one step ahead

if you can.

Thats all I can think of right now, I have limited time on public

computers due to my notebook being in the shop...but I will answer.

Be well,

Kathymichelle

>

> Hi everyone,

> I've been hanging out for several years now--found chiari after an

auto accident in 97---went to NY last year for decompression but had

TC surgery instead. Unfortunatley I havent had any improvement to my

symptoms. Been off work 3 years now and trying to get on SSD. After 2

appeals, got an attorney who basically told me that they wont take my

case unless they think they can win (yah, cause they want my money!).

Anywho, went to the hearing today and now I'm even more stressed than

ever. Was told I wont know for 30-60days the results (cause I dont

mind waiting even longer). Obviously my attorney couldnt read the

judge very well so cant even give me a glimmer of hope. The judge

didnt even seem to know what was wrong with me and got more confused

while I tried to explain! I would really like to hear from people

who have been through this and got to the other side ---one way or

another. I know there is a alot of people with chiari out there who

have gotten SSD---just need some " hope " at this point!

> Thanks!

> Sally G.

>

>

>

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Hi Group.

I wanted to relay an article in the USA Today paper dated Monday, July 30,

2007 that is entitled " Disabled Worker Cases at a Record. " It discuses " some

wait years for claims hearing. "

The article talks about the Social Security Administration facing a growing

record of applicants applying for SSI/SSDI that it is creating a large backlog

of appeals. It stated that as of June 2007, there were 745,000 cases pending

and the average wait for a hearing was 17 months. It also stated that in some

parts of the country, applicants must wait up to 31 months and some " have died

waiting for a hearing. " They expect the backlog to double in six years and

report it could reach 1 million by 2010. Only two years away.

What's the problem? Congress providing $1 billion less to Social Security as

well as field offices losing 2,300 workers in less than 2 years. The last time

staffing was so low, it was the 1970's.

The last statistic reported that out of 2.5 million people who file disability

claims each year, approximately 65% are initially denied. Of those that appeal

and eventually go before a judge, 62% of the appeals are approved. But, this

waiting period for a federal hearing can vary from state to state.

The important point here is to do your homework thoroughly first, BEFORE you

call and make an appointment to apply. If Social Security has more than enough

information when you actually apply, it will make their job easier and more

people should be approved the first time. In the class I took on how to get

approved for SSDI the first time, they cited lack of preparation and proof of

disability as the primary reasons for rejection.

Preparation involves making a list of each and every doctor and hospital visit

you have had with the name of the hospital or doctor, complete address, and

phone number.

Then, calling each of them to request a " Release of Records " so you can obtain

all your chart notes yourself. Put on the form, " for SSDI appt. " Collect them

all and put them in date order in a binder with dividers.

Make a list or spreadsheet of your medications, the doctor who ordered it, the

drug name, dose, whether you still take it or not, and ALL the side effects.

You can get them on the internet by doing a search for the medication. It

doesn't matter if you don't have all the side effects, list them all.

Write a history of your life's symptoms starting with the earliest and

progress to now. Write down what the symptoms were, who you saw for them, what

was the diagnosis, what was the treatment, did the treatment help, do the

symptoms still exist, and how they affect your daily life. The last part is

very important. How does fatigue, for example, affect your daily life? It

makes it difficult to get out of bed and get your kids ready for school. It

makes you feel unsafe driving a car. It makes it difficult to focus and retain

information. List every single symptom you have as I described. You HAVE to

PROVE to Social Security that there is absolutely no way you can work ANY job 8

hours a day, 5 days a week. So, if you are a teacher, you have to prove you

can't even work at Mc's.

Have a friends and family members write Affidavits that depict how you were

when you met and how they have watched your symptoms progress. This must be

notarized. You can have as many as you want.

Finally, you need to have your Neurologist or Neurosurgeon write a letter on

your behalf supporting your decision to apply for SSI/SSDI based on your

symptoms, therapy tried, and prognosis for improvement.

Do NOT anywhere in your documentation give the impression or say what you CAN

do. Leave that out.

I hope this helps all of you who need it. Being prepared before you ever make

the first phone call to set up an appt to apply for SSI/SSDI is so important.

Once you make that first call, the clock is ticking (literally).

All my best,

p.s. You should be able to find my tips on the CCI files. was working

on it.

---------------------------------

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This is an addendum to my previous post.

For those of you who have not been diagnosed with one of the accepted

diagnoses, print out information from reputable websites as well as ask your

neurologist or neurosurgeon if they will come to court on your behalf to explain

your condition and it's affects on your ability to work to the judge. You are

legally entitled to representation.

Good luck.

p.s. For those of you who have to be assessed by a Social Security doctor,

know that their doctors are just " run-of-the-mill " doctors who have no special

training in any one area and probably never heard of our condition(s). Expect

that. Bring printed information from the internet from reputable websites to

that appointment. You still need to type out a life history of your symptoms in

detail because every medical condition is different and everybody's symptoms are

different. You want to describe your symptoms in so much detail that it

literally paints a picture of your daily life. That is what stands out more

than just a code and a diagnosis from their " accepted list of diagnoses. "

And of course, keep copies of everything and get a receipt for everything you

give Social Security.

Lastly, always get the name of the Adjudicator handling your case and their

phone number so you can call, introduce yourself, and ask if they may need

anything else.

Believe me, it goes a long ways.

---------------------------------

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My SSDI physician evaluation was an internist; and very versed in Chiari,

Ehlers-Danlos. Originally I was scheduled with a chiropractor, but last

minute that doctor called in sick and I had an internist, so sometimes you

do get a specialist.

Best of luck to all,

Kathy

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