D I S A B I L I T Y

[JCappiello]

Hi Everyone,

I was just told by my electrophysiologist last Tuesday that I am "disabled" and he will not clear me to go back to work.  He told me to hire a lawyer (since I'm 26 almost 27) and apply for social security disability benefits.  I am sitting here still in shock that my career is over.  I cried to the doctor (not like me) and he apologized and said that I am no longer fit to work.  I am a medical coder - the job is pretty sedentary - but highly stressful.  Since I only get relief of pre-syncope laying down and I can not sit too long or stand too long without passing out, plus my other symptoms I am deemed unfit to work.

My current diagnosis are as follows:  Severe POTS, Inappropriate sinus tachycardia, EDS hypermobility type 1, Chiari 1 malformation, chronic fatigue (due to those diagnosis), central vertigo, neurocardiogenic syncope, mild levoscoliosis, sleep disorder, herniated lumbar disk with degenerative disc disease neck back and thoracic radiculopathy, photophobia, unsteady gait, generalized anxiety disorder, panic disorder, and depression.

I would really appreciate any input from those who applied for SSD or those who are thinking this may be an option for them. I'm lost and scared in the fact that this is something I have to do. So anything you guys can tell me would be great.

Thanks xoxo

[JCappiello]

Thank you everyone..

[andy57]

Hi, I'm 41 and just got approved for SSI after about 3yrs of trying,but I didnt have a lawyer at first. I was born w/Spina Bifida,Hydrocephalus,Chiari Malformation II. I felt like you when I realized my work life was over. The one good thing you do have on your side is your doctor said you can't work. Find a lawyer who doesn't get paid unless you do. And like the above had said, write down EVERY little issue you have,even the embarrassing ones. Good Luck. Any questions feel free to ask me.:)

[Archeress]

I was approved for SSI on my first try... but I have never been able to work. Make everything sound like your worst day when reporting and be honest. Write down EVERYTHING. I hired a lawyer for mine I was 26-27 when I was approved. I did not feel I had enough documentation but I did apparently. At the time I was being barely looked at for "fibromyalgia" you should have a strong case because a dctor is backing you up... good luck =)

[Sexybare]

I am only 33 and that was the reason for first denial. Be brutally honest. I think everyone gets denied at first. But than u get a hearing to tell the judge face to face. Always get copies of tests, cds and reports and make sure u have dr documentation of all diagnoses...if I think of more ill let u know

[JCappiello]

I am so happy for you!..... My lawyer is sending me out paperwork, which I should have either today or tomorrow.. I am very nervous about filling it out, but I know to be open and honest in my responses is very important.  Any further advice?

[JCappiello]

Resa,

I was told to get an attorney because of my age.  I am only 26 and getting approved is hard enough, but especially being so young.  I am not sure of your age, but according to what I have read.. age is a big factor in being approved..

[Sexybare]

After being denied and appearing at my hearing I was just approved for disability :)

[Resa181]

Hi Selma:

You asked me to add my information about Chiarians filing for Social Security Disability and asking for the help from their Congressional and Senatorial Offices.  I would be glad to but I don't understand about thread links, etc.  I have just been monitoring the site and posting about Chiari for a short time and just felt compelled to respond to JCappiello because I knew that the information she had was wrong about needing an attorney to file her claim for SS-dib and I didn't want her to give an attorney money that I knew she needed more than the attorney probably did if she didn't need to.  Just tell me how to add this info where it will do the most good and I will be happy to do so.  Have a great day, Resa.

[selmaS]

  Thank u for posting this info, may I ask that u also add it to our thread links to tips to help win SSID....that way it is all in one place : )

[Resa181]

Hi Selma:

Hope you are having a great day.  I just sent the following message to "JCappiello" and I thought you might find it helpful.  I know that not all Chiari cases are the same but I do know that there is help out that for Social Security Disability cases other than attorneys.  Attorneys charge people filing for disability from day one and get their fees from any backpay that the individual receives.

If a person has to go to a hearing before an Administrative Law Judge, that is the first time in the appeals process that a person really needs an attorney.  A person can file for SS-dib and request reconsideration if denied the first time by themselves.  The longer an attorney can keep a claim going, the more they can legitimately charge a client.  Sounds terrible, but true.

Most Congressmen and Senators have caseworkers in their offices who work on Social Security and Veterans cases.  These caseworkers will help people with their cases.  Although they are not allowed to fill out their paperwork for them, they are allowed to follow and impact on the case.  I know this because I worked 31 years for my Congressman in my area and just retired because of my Chiari.

[Resa181]

Hi to all fellow Chiarians.  

I have been dx'ed with Chiari 1 since my first decompression in 9/2005.  It was moderately successful and I was able to go back to work until my second decompression in 8/2012 due to complications with scar tissue and "brain slump".  I worked as a caseworker for a US Congressman for 31 years and my casework was military and veterans assistance - however his Social Security caseworker helped me when I had to file for my disability.  

You DO NOT need an attorney unless you are denied by Social Security initially and at the reconsideration level and then have to file for a hearing before an administrative law judge.  If you get an attorney too early they will just take part of your back pay or charge you b/c that is how they make their money.  

Make sure you get all your medical records to Social Security when filing your claim and when you fill out your paperwork be as detailed as possible....don't just answer yes or no to the questions...go into detail...tell them how depressed and worthless you feel b/c you don't feel well enough to work and that your head is going to explode, fully explain every symptom that this lovely Chiari just keeps on giving.  That you cant sleep, you have to make the disability examiner understand you from the answers you give on the paperwork you fill out.  THEN CALL YOUR CONGRESSMAN'S OFFICE AND ASK FOR HIS DISABILITY CASEWORKER!!!!!  Most Congressman have offices with staff that do casework for the people in their District who elected them...this same with your Senator.  That is one of the reasons you vote for them.

[JCappiello]

Its unbelievable the process we must go through to prove that we are disabled...  do you have any other dx's besides the lovely Chiari?

[linnielou232]

I am sorry to hear you got this news.  I was also told this about not being able to go back to work, and I was so disappointed and depressed.  I applied for SSID I got a lawyer, have had my hearing, and I was denied.  I am now appealing this and I just received a letter saying it takes 1 yr to get a response.  The process is a long one so please be patient with this process.  Hope this goes faster for you.  I also had a written letter from my NS stated I should not return to work, but  the JUDGE found 3 jobs he said I could possibly do which I couldn't do if I wanted to.  I would be working if I could but us that have Chairi can relate.  Wishing you the best.
Linda:)

[selmaS]

  Hi..we do have a thread on tips to help win SSID...I will bump it up....it seems most times those with Chiari are denied the first attempt and have to go back in with an appeal...u will need a lawyer...and it can take 2 yrs...or at least that seems to be the general time frame .

Know getting SSID is as frustrating as getting a chiari DX.

[JCappiello]

Also I forgot to mention... if anyone has heard of any successful SSD cases at 27.  My lawyer said she has seen younger, but I am still very concerned..