Applying for Disability?

[Nawnie]

Was wondering and wanting to know how many, if any have applied for Disability to stay home and not work due to pain, discomfort and continuing issues? I have Arnold Chiari II and Syringomyelia, and had decompression Brain Stem Surgery back in November of "04". I am still very young, and have done everything imaginable with the pain management for this Disease, but continue to have problems, but also know there are many so much worse then I, and also how much worse it can get. I've been home from my job for a week now, and was in the ER last Tuesday, and know there are decisions I need to make, but I'm struggling and just need some advice and encouragement! Thank you!

[JCappiello]

Hey... I have Chairi 1, EDS, POTS... and a whole bunch of other things.. I am almost 27 and my doctor told me to apply for SSD.  I got a lawyer to assist with the process since I am very young- as considered by SSD.  I have been out of work since 12/12 .. I started the SSD process last month and the lawyers are currently in the process of collecting all of my medical records.. Don't be afraid to apply .. my lawyer actually works in Long Island .. right near the Chiari Institute and she told me she recently won a case for a girl that was 25 years old....

[selmaS]

  Hi Lisa...I had my surgery and it will be 4 yrs the 28th of this month....I feel my surgery was a success and I am so glad I did  it.

  If u r only one yr post op u r still healing...so what u do can affect how u feel,...r u back to work? If so, what do u do at work?

I continued to see benefits into 2 plus yrs and in fact looking back at this last yr I can honestly say I still had some positive improvements ....so, be patient and listen to ur body,,...do not over do or push to get things done...go slowly and ur body will heal....

May I also ask, did they rule out related underlying conditions?

[SmilingLisa]

Hi,
Anyone have a successful chiari  surgery first time or second?  If so, who was your Doctor?  and how long ago?  Do you still see these like pulsating images sitting on the toilet. Do you still get headaches and lightheaded?  I had my surgery a year ago.  Still have pain in the back of my head.

[selmaS]

  Hi and welcome to the Chiari forum.

We have some older threads on Clinical trials, u can use the links in the older threads to see what current trials for Chiari  r being done and if u qualify.....they do testing and give treatment at no cost to u as a part of them tracking the info on ur recovery.

http://www.medhelp.org/posts/Chiari-Malformation/clinical-trials-are-recruiting-now-/show/706710

I hope this is helpful for u.

[angeleyes1468]

Hi my name is Paula and I diagnosed with chiari 1 about 5 yrs. Ago and I'm supposed to be seeing a doctor every 6 months for it but I don't have any insurance and I can't hold down a job because of how bad its gotten over the years it has been terrible for me and scary because the more I research the more it makes sense what has been happening to me most of my life that I can remember..its effected my eyes,my breathing, my sleeping my eating and walking and so much more and I just don't know what I can do and where to go for help...I feel like I live in a fog and its hard to concentrate anymore..any suggestions?

[selmaS]

  Hi and welcome to the Chiari forum.

I want to thank you for sharing ur chiari journey with us and ur journey to SSID......this can be difficult depending on the individual and the Dr in charge...

  I would ask that u add this to ur profile page journal so that this is more accessible to those that may want to read it again....

  ANd I hope u consider staying around and sharing more of ur experiences with us.

  Glad to welcome u, but not happy for the reasons that bring u.

      "selma"

[tgerald]

I am a 47 year old Chiari patient and have been battling it since I was 8 yrs old. I was in a car accident when I was 8 and started suffering severe headaches and grand mal seizures from 8 -18 years old. I was treated for years at Stanford and they never could figure out why I was having seizeres. Then in my early twenties I started suffering what doctors thought were allergies, but skin test showed negative. In my early thirties I was diagnoised with asthma and put on a nebulizer 4 times a day. I then started suffering from throat issues and not being able to swallow correctly, no gag reflex, choking, loss of voice for up to 30 days, and breathing became more difficult with asperating. I ended up having operations by removing my tonsils and adnoids as the docs thought that was my problem. Then they did sinus surgery thinking that may help, all to no avail but only getting worse. In my mid thirties I started having severe nerve pain in my back (lower, mid and neck area). In 1999 they did an MRI and found I had Chiari, I was immediatly referred to a Nuerologist and told I needed the surgery but sad to say I was to afraid as I had gone though 8 operations by this time to of course no avail and thought heck no this won't work either.
By the year 2009 I had gotten so bad that I missed 4 weeks of work, beenj removed from work barely breathing, transproted to hospital twice by ambulance , been intubated and knew I needed to do something. I finally had the surgery on June 10, 2009 but the outcome was that I now have permanent nerve damage in the left side of my brain. My symptoms are permanent now. The nerves damaged control the symptoms I have.
I did go on disability for 6 months and then chose to try and go back to work. I went back 9/2009 only to be put on permanent disability 5/2011.
So all who wnat to know can you go on diabiltiy for Chiari, Yes but it may be a challange depending on how severe your damage and symptoms are.
I advize anyone out there who has been diagnoised to have the surgery ASAP!!!!!!!!!

T Gerald

[Shane99]

It's possible you could get either. It really depends on how much care she's going to need and for how long. Check with your Doctor, and then with your Human Resourses Department at work. That will get the ball rolling and you can get some income, then it can be adjusted as needs warrant.  

If it's diagnosed as being long term or permanant (hopefully not) you probably can get that also. Chiari 1 is usually treatable to a certain degree, but it all depends on each individual. Most likely if it's short term, you can get something from your work pretty quickly. Most jobs aren't going to argue over short term. And if your doctor says its needed, there's not much they can do against you anyway.

[Duer08]

Just a question My five year old is having surgery on monday and shes been dealing with symptoms all her life but we just found out one of the problems is Chairi Malformation I and im going to take off work to take care of her Does anyone know if I can get short term disbility for her or does she need long term!!!

[Shane99]

I too am curious about this. I have Short Term Disabilty from my work Insurance, so I've been able to get some money for the last few weeks, but I don't know what to do when it's no longer considered "short term".

How do I go about getting disabilty? Who do I talk to? I'm not sure how to really even start the ball rolling.

[tazmanforever]

The first step, since it sounds like you've been working, is to apply for state disability.  It pays quite a bit more than SSA and is generally good for up to a year, (considering it may take that long to get SSA.)  Then begin the SSA process soon afterward.

I tried for SSA years ago and was turned down.  I didn't retry at that time, but the pain has gotten so much worse at this point, I'm left with no choice.

If you can manage the wait and 1st and possibly 2nd refusals from SSA, then apply on your own.  Those bloodsucking attorneys, although helpful, manage to get a nice chunk of your initial award.

Good luck and God Bless.

[4bopp]

I applied for disability for my son and he finally received it on the third try.  They will want to know what you can do, how long can you do it and how often do you do it.

Such things such as housework, yard work, walking, shopping, classes, hobbies, yes, they like to ask so that they can learn about what you are capable of.  Tell them of your pain and all the little details.

Then of course they want to know your symptoms.  I went to the drs and asked for all his reports and took them to SS my yself because I wanted to be sure that they received them.  The only way to find out is by trying even though it may get discouraging, just keep trying.

[(Not so) Spunky]

I haven't applied yet, mainly because I'm lazy!! But approval is based on what you can and/or can't do- not your diagnosis. Make sure you list ALL your symptoms and how they effect your life. That's the best advice I can give. And don't be discouraged if you're denied the first (or third) time- that is normal. Just appeal as many times as needed. If your Dr's are on your side, you may even want to check into hiring an attorney if you get denied. If your Dr's say there is no reason you can't work, well, I hate to say it, but your chances are very slim. But their opinions don't always matter. There are people who were approved first time around with Dr statements saying they are in perfect health... I know it's a LONG process, but hopefully ot will pay off for you in the long run! Literally!