Hi and welcome to the Chiari forum.
I am so sorry u r in this situation and then to have to deal with chiari and the "Royal Chiari run around" we all get. One Dr says u need surgery the next says it is all in ur head, duh yes it is....but, the issue is having the right Dr...I am sure u may find enuff NS's willing to do the surgery as that is how they get paid..by doing surgery...but u need a Dr that is well experienced and knows chiari and related issues b4 u even consider surgery.
As far as disability it can take a while to get it, and getting a few more dx's may be in ur favor....I applied for LTD and was denied 2 x's and I can not fight it as the Gov is involved with it and makes it a federal case...it would cost me more to fight it then I would get...sigh
I have yet to try for SSID as I am waiting on getting other Dx's and hoping that will help my case so I will not have to wait as long.....
The best way to do this is with an attorny.,....
The other thing u may want to look into is clinical studies for Chiari,....many without ins do this to get testing and treatment free....
I'm not sure where u are but I'm in CA and I am getting SDI (state disability) while I recover from surgery.
SSDI is a LONG process. Generally u apply, they deny, u appeal, they deny, u obtain an attorney and they fight for ur benefits. Something like 85% of people applying for SSDI get denied initially. I have done quite a few SSDI claims so if u have any specific questions, send me a message and I'll help I as best as I can.
I have an attorney, no $ paid unless I win, and I was denied. My lawyer appealed it in may, so still waiting. I want to go in front of judge and explain my case and what chiari is, so I will be happy when and if that day ever comes. Apply now, don't wait, for its a long process. I believe we all should receive disability, but its hard because no one undeestands nor knows what it is.....keep your head up...but don't hurt yourself by looking up. ....hugs,Dana
I'm recieving SSDI and have gone through The Chiari Run Around as well as the SSDI denial process. Forgive me if I'm brief, I'm having a bad neuro day.
It's so frustrating with docs. So many of them claim to have Chiari experience yet don't have enough to be a truly trained specialist (as a Chiarian I probably could look at a MRI and identify herniation, and I have a English degree). I have found that keeping a file of my doctors reports, radiologist reports, and immaging scans (you can get free patient cd copies at most places) has helped me put all of my medical stuff into perspective when trying to show a doc what's going on.
Keeping my medical file helped with my SSI appeal to. I too got a disability lawyer that didn't recieve payment untill I was paid. I appealed the first time myself, and was denied. Apparently it was too soon after my second decompression (I applied 6months afterward and I think I was supposed to wait a year in AL), I was too young (38), and had too much education (2 BA degrees) to be deemed unemployable. However, the second time I took my medical documentation to my lawyer, and my diagnosis/ symptoms/ meds. Then my lawyer pressed for a face to face with the judge. When asked to tell him why I thought I was unemployable I just said "I can see being skeptical about this with any One of my symptoms, but I have All of these things going on. If you can find me a job where I can get paid for preforming a task if and when my symptoms aren't flaring up, and still be able to make a full time wage; let me know". The judge then had me explain what a few medical terms were (he didn't know what syringomyelia was or neurogenic bladder). Then he gave me my SSDI and settlemement.
I hope this was helpful/ made sense.
I want to thank you all for your responses, I have never been with any forum, support group, or known anyone with this crazy condition ! I read so many of your stories and just cried! All of your responses are helpful, and so appreciated ..though I do so wish none had to deal with such a controversial and very misunderstood condition ! So my heart goes out to all. I am so wanting to give up, but my daughter keeps me fighting, and hearing your stories, well ! You are fighting too...at present there is much I would like to ask and share, but am new here..So I will close this post with a sincere Thank You !..feel free to ask me any concerns.
I was in a similar & desperate situation, but I was mis-dx'd with chronic fatigue syndrome. In some ways the cfs dx was a blessing in disguise, because even though I had to wait the typical 2 yr, it was obvious something was seriously wrong, as I couldnt stay awake, not even at my hearing!
It truly was the worst period of my life, but somehow i got through it. I HAD to; i had 2 children.
Best of luck to you! You will find lots of info& support here.
I was in tears reading your story because I think I can say for most of us. We have been on the same journey that you are enduring right now. It is a hard and rough road, but there is hope, at least now you have a Dx's and as Selma suggested there are NS that will do the surgery, it's just finding them. They are out there. I haven't been able to work for 2 yrs which have been a hard journey for me to except. I filed for SSI last june was denied and got a lawyer and waiting for hearing, so I would suggest if you are going to apply do it now because it is a long process. I just received a letter from my NS stating I can no longer do any physical work or secondary work since I have concentration problems, lighting, noise etc so I am praying this will help. I want to tell you please don't give up and don't give in to this or anything in your life. Do it for your DD and also for yourself. You are worth fighting for and we are here for you anytime to help you get through this. This is an awesome forum for info and ecspecially for support. You are not alone in this journey and we are here to help you walk through it. We may no longer be able to run, but we can now walk and enjoy the ride of this journey together. Once a Charian always a Charian. I am proud to say "I'm a zipperhead". LOL...I pray tomorrow will bring you a stronger day for YOU.......