has anyone tried for disability with arnold chiari

[jnclark]

I had surgery 2 years ago in November 2008, I am still having issues and still seeing the neurologist. I can not sit for very long nor can I stand for very long without being in some type of pain, let alone sleep on the back of head at night.  I am currently not working at this time, the company states due to the economy, but I think it was due to my pain and me moving alot from my desk. I am still on pain pills, just to ease the pain from my head and back.
But I am wondering if anyone has every tried for disability.  For I am afraid of what the future has to offer now.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, were you checked for ALL related conditions? Syringomyelia, EDS, Tethered Cord, ICP, POTS, ......???

It is possible that your symptoms are due to a related condition...when was your last MRI?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, did they rule out ALL related conditions b4 you had surgery?
POTS could be part of the tachicardia  issues you have.....and EDS or Ehlers-Danlos Syndrome could be part of the disk issues you described....many with Chiari do have these related conditions and they can be also responsible for the pain you continue to have....

In order for a Dr to take this seriously you need a true Chiari specialist or a Dr willing to research it and ALL related conditions...

Have you had a MRI since your post op one?

[Riss0980]

I also have Chiari. I had surgery all the way back in 2003, and I still suffer from it. Now I have my neck straightening out and bone spurs on my neck. I have horrible lower back pain and weakness. I have degenerative disc disease and lumbar stenosis. I had a large syrinx before surgery that resulted in permanent nerve damage. Every disc in my back is desiccating except for one. I'm in a state of constant pain and weakness. Now I'm having heart problems and bouts of tachycardia. I'm wondering if anyone else has experienced this as some doctors think there is a correlation of disc problems in the neck directly affecting the vagus nerve and causing arrhythmia and tachycardia. Also work has become almost impossible for me at this point. Too much pain. Any thoughts on getting disability for all this?? I live in KY, and quite frankly a lot of doctors downplay chiari and act like its no big deal. But my surgeon told me I had one of the worst cases he had ever seen. Anyone else have doctors act like its no biggie??

[Jeff422004]

Hi, I have chiari type 2...  mine was found bc I was litterely walking into walls when I was 16.. I had surgery on easter day 2013.. went from seeing my regular doctor to neurologist to having surgery all in 3 days, I missed half a year of school, I was a junior living in upstate NY at the time.. my symptoms were, headaches, vision n hearing problems,  swallowing problems, no gag reflex, balance and cordination problems.. the surgeon I had said the surgery was supp to take 3hr it took 4.. he said I was the second worse case he has had in 2013.. they told me that I will never be %100 ever again, they opened me up, hole in my skull.. then drained some fluids around my brain, removed couple centimeters of first n second vertibrae, then closed me back up.. I'm not sure if I had nerve damage or not but probably.. the cerebellum was way far down my spine.. the doctors and surgeon did tell me that I would probably have to have another surgery again in 5 or 6 years, which I did again in 2008, they did the same thing all over, they were talking about taking the first n second vertibrae totally out and putting a metal rod in my neck.. I'm in 2008 I was 21.. now again I'm 29 and my symptoms are back, headaches, vision and eye problems, swallowing problems, balance and cordination is worse, I have high blood pressure, very bad severe sleep apnea, stage 3 kidney disease,y spine is deteriorating, from L1-L5 the disc are bulging, constant lower back pain.. I can't stand for more than 20 mins w/out my back hurting like to shower or do dishes, can't lay down,for long periods bc my back starts hurting bad, I can't walk that long or far bc of my back and I also experience leg and neck pains.. they also get very stiff.. if it's cold out my body is sore.. i live in ca now and it gets hot, so when it's hot I sweat like crazy and my body gets really week.. stiff/tensed muscles.. and so on.. long list.. I'm currently fighting for disability, this is my 3rd application.. Fit's 2 times I tried on my own and was denied.. now I filed again in 2015 and this time I got a attorney, again I was denied 2 times and nown waiting for a hearing with the alj, in the meen time I'm getting all medical support and ino that's needed, I'm currently waiting for my doctor to get word back from a neurologist so I can go see one again.. I have a lot of medical issues on record so this time I should be approved.. well I hope.. and with symptoms I'm having again I hope the neurologist don't tell me I need another surgery bc I don't know if I can handle that.. oh and I've been out of work since 7/4/13... I do not drive due to I don't wanna have problems when I drive bc my legs and feet doing what ever they want sometimes bc I have no control sometimes.. hope this all help.. yes apply.. if you need more info jis reply to this

[n40066]

i would absolutely try and get disability for your son,  i was told to do that for mine when he was 15, but didn't want to "label" him.  i really wish i had done it because he is now 24 and has not been able to hold a job more than 2-3 months!  do it now, my friend!
elizabeth

[MomTerrified]

I too have wonder about that, but for my son. We live in Canada though and was wondering if I could get assistance from the Prov. under ODSP. It would help some much, especially for the counseling he needs so badly.

[jnclark]

Thanks for the response.  I also have nerve damage. I signed up for SSD like my doctor recommended, they say it will take 3-4 months for a response. i will let you all know. Again Thanks

[n40066]

i've been on ssd since 2005.  i got it before i was dx with cm.   and have stayed on it because of the cm.  i also have a friend in my hometown that was just approved for ssd.  she has cm, syrinx, thyroid issues and lots of perm. nerve damage.  she was approved first try.  she did use an attorney.  it can be done if your symptoms are severe enough, your dr. states that you are disabled and you have a good lawyer.  good luck!

[selmaS]

Hi and welcome to the chiari forum.

...and for sharing ur SSID experience with us....chiari is not on the list of disabilities and is y it takes appeals and lawyers for us to win......

May I ask, have u had the PFD surgery for chiari and what r ur lasting effects?

We r happy to have u join us here, but not happy for the reasons that bring u.

"selma"

[Funk99]

I was finally awarded SSID. I got denied the first time and had to get a lawyer to help me. It took three years to get. There is also another person in my town who also received SSID for Chiari.

[thieb9]

I have chiari and syrinomyelia and I am in the process, I applied in August and am still awaiting an answer. I also have hiradenitis, so I am hoping having all of these helps!

[selmaS]

Hi...if u r referring to SSID, I know of a member that also had syringomyelia that was awarded disability....I have not applied for SSID as I was turned down for my LTD twice....it is very disheartening to say the least.

Also, do u know do u have related issues going on...perm nerve damage , a syrinx, tethered cord?...

It all depends on ur Dx and how ur dr lists ur limitations......but it is possible to get SSID, but it may take time.

"selma"