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daisy1947

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PostSubject: IIHand disability   Tue Oct 23, 2012 8:56 am

I am just wondering how often people with IIH go on disability, and if they have problems getting approved.

My 25 year old daughter has been very ill for 2 years, finally was appropriately diagnosised. She needed emergency surgery her pressures were so high - in fact 3 surgeries in 6 weeks to get a functioning shunt. She also spent a week in the neuro ICU. She is a trooper, but frequently incapacitated by headaches. When she has a bad one, they last for days. She has good days and bad days, but the bad days prevent her from holding a job.

Any thoughts?

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medmisfit
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PostSubject: Re: IIHand disability   Tue Oct 23, 2012 6:17 pm

I think it varies. I was denied the first couple times, but it went through at the hearing. Of course I was back to work at that point, but it helped w/ all the outstanding medical bills. Other members have reported they're approved on the first try. It's a long and painful process, but should be ok as long as doctors document how IIH limits her functioning and ability to work.

Good luck!!!
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Sophiasmom
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PostSubject: Re: IIHand disability   Tue Oct 23, 2012 7:45 pm

I have been on disability for 3 years. I didn't know it was IIH at the time I applied, it was for chemical sensitivity. which I realize now is just one of my IIH triggers, so it was really for my IIH symptoms. I got it at my appeal. I am not well enough predictably to hold down a job.
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daisy1947

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PostSubject: Re: IIHand disability   Tue Oct 23, 2012 8:39 pm

Thanks. I think she needs to give it a try. I don't see any immediate relief for her. Her headaches go for days where she can barely function, then she will have a period of feeling ok (but not yet good....)

It is good to know people are successful- even if it takes awhile.

If she gets better- and can work, then Yea!
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Wylee
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PostSubject: Re: IIHand disability   Wed Oct 24, 2012 8:20 pm

The best part of getting SSD is the trial work period that allows you to try to work when you feel your symptoms are in remission.
I was approved for a different disease, but like Deb, it was probably the IIH.
She should give it a try.
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daisy1947

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PostSubject: Re: IIHand disability   Thu Oct 25, 2012 8:51 am

I appreciate everyone's advice and comments on the various sites. It has helped me appreciate this disease as a life-long disease that is managed, but not cured. I have become more successful in explaining to others the impact of this disease on her, why she may "look fine," but not BE fine.

It will be a bit of a nightmare to locate all of her medical records to file for disability (2 different states...with multiple different doctors, etc, etc), but I think will be worth it now that I am realizing she will not just return to "normal" now that her shunt is in place. And when she is ready, that trial work period sounds great!

Preparing myself for the road ahead... fingers crossed
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