Soon I will be 44 and almost 2 years since my surgery and over a decade diagnosed.
I have applied for social security and have been denied twice and await my hearing. I have awful days and bad days more than good days. All I wanted for my birthday was to not swallow 15 pills a day. I want to be heard by the doctors and have them understand what I go through. From insomnia to shingles I have anxiety about wanting to start over and see if my medications can be adjusted is so that I can ultimately loose the weight that makes me depressed.
Just a birthday wish from a Chiari Gal.
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Hey Kmom,
For social security get yourself a lawyer on a āno win, no feeā basis. Specifically one who deals with social security law. I tried to deal with it all myself previously and got burnt badly. On my 2nd attempt I obtained the lawyer and won, but it was not an easy process, not at all and for this reason I strongly recommend you have legal advice.
Merl from the Moderator Support Team
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Thank you. Iām in a part of GA where it almost 2 years for the hearing. I have an attorney now, she thinks given all my other ailments I can win at the hearnkng.
Itās so very stressful my private disability company sent someone to my house. Iām trying to be overwhelmed or paranoid about the whole situation.
Yes, I too had insurance investigators outside my home. Very intrusive. The claims assessor was very rude and very arrogant when I queried my income protection payment which was less than it should have been. She stated āYou are getting what you are getting and thatās all you are going to getā¦ā I appealed the amount and the correct amount was then paid, with backpay. So when it came to the total permanent disability payout I was considering a lawyer, then they had the investigators stalking me and that was the last straw. I then went legal and got the lawyers involved. This was the best thing I could have done, only wish Iād done it sooner. They took care of everything. I had to attend 2 drās appointments, one with a psych, one with a professor of neurology and they both agreed that I could no longer work. The insurer had no choice but to payout the full claim. I also applied for a copy of the professorās report via the lawyer and got that too, so now Iām in possession of all of the relevant documentation. I used this documentation for my (eventually) successful Social Security Disability claim.
Sure it cost, but it saved what little sanity I had/have left.
Merl from the Moderator Support Team
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This is my first post so please bear with me 
I can completely understand and empathise what u are going through and Iām so sorry u are feeling the way u do. A little about my story . I donāt want to say my situation is better in any meansā¦ just different.
Iām from birmingham in the UK and am 33 years old in a couple of months. I had chairi surgery in 2013 although back then it was Arnold chairi malformation. Itās too vague to characterise it as that now as some āwarriorsā have certain symptoms of all 5 categories and still be āaliveā
Anyway. During my night shift in a care home I was lifting a very heavy object (a person) and I felt something pop in my next. 4 weeks later emergency brain surgery haha
The UK at the moment is struggling and the government is in a mess! Because I work full-time as a mental health support worker I am not entitled to āsick benefitsā that most of our country is on. There are some days I could really use a motoibility car and other days I am walking 2 miles unaided.
Itās a shame that I feel the need to explain in detail and get medical records to back up the fact I donāt just get āheadachesā
Sorry I have drifted what Iām saying to u is always remember that u are NOT making ur symptoms up! U are NOT lazy and U HAVE got ur place in society through respect and hard work. Donāt define urself as this āconditionā our brains and bodies just behave differently society needs to catch up . U are still the person u have always been If u need advice or support I will gladly give it. Sorry it was so long
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āOhh, I get headaches tooā¦ā the number of times I have heard this line makes me want to scream. This aināt a headache this is a mind numbing explosion of agony. Iāve had a craniotomy, among other neurosurgical procedures and wear a hat to cover all of the holes and scarring. Now when I get the line of āOhh, I get headaches tooā¦ā I lift my hat and say āNot like these you donātā¦ā The look of shock 
I often get when they see my skull shuts people up fairly quickly.
None of us are here by choice, others want to judge, then fine let them judge, but if they had to manage this for a day, a single day, theyād think twice before passing such judgement. They have no idea of the realities of it all.
Merl from the Moderator Support Team
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I had surgery in 2011 and a stroke a day after that. Not sure if my doctor did something wrong or if my surgery just did not work but 2 years later and a lawyer I was told I could never work again and given social security disability. I also have seizures on top of my chiari symptoms (yae me) I have a service dog, trained myself for my seizures. I have good days but more bad days. I just try to ignore the bad days now. I have learned to live with it. I have so many headaches that I do think there is a time when I dont have a headache.
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I had Chiari surgery 18 years ago. I had every symptom known to man. I stopped taking all of the 15 pills a day. I really believe many of my symptoms were side effects of medication. It is difficult to break the habit, but I have been med free and symptom free for 16 years. Have your hormones checked. I think Chiari throws them off. I am 60 years old and feel better now than I have my entire life. I walk 7 miles a day and in 2000 I could not even get out of bed. There is hope 
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Take courage, Kmom! My application was rejected 6 times over a four-year time period by SS - and I was told that was ānormal.ā I did finally win - but with the help of an attorney. When I was applying for disability, I had not yet been diagnosed with Chiariās. I had only been diagnosed with āChronic Fatigue Syndrome,ā which my attorney said wasnāt on SS Disabilityās āList of Disabilities.ā Thatās why I kept getting rejected - he said. I always wonder if I need to RE-apply under my correct diagnosis, if that would change anything. I donāt know if Chiariās is on that āList.ā
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I am with you on the medication front. It seems that Chiari folk get overloaded with medications as doctors do not actually know how to help us! We need a reboot sometimes. Glad to hear that you are out of bed and living well.
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I also agree with the reboot meds. Sometimes the best thing is to stop all for at least a week, dry out. That is REALLY hart, and painful, but then if you need something add back SLOWLY one by one spaced out to see which one works. Maybe you can toss some. For me, I tell me pain doctor and PC, please donāt take away my antiinflamitory, and occasionally muscle relaxers. Other than that regular vitamin for us close to 50 year young ladies.
As for SSA, Iām still holding on to working for NOW. Currently trying to get into Mayo Clinc Florida since ANOTHER disc c7-t1 is now blown out. History, 2013 fusion c5-6, c6-7 misdiagnosis of chiari. 2016 chiari decompression surgery. 2018 return neck/ head pain, 2019 almost no feeling in both hands due to new nerve damage, yuppie me. Hang in there.
This community site has has ALWAYS been here for me and we are here for you and DO understand. Donāt give up hope!
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I would love to talk to you about your symptoms! I have almost an identical history. My hands are now going numb!! I am a nurse! I NEED my hands!!
I am responding to āBrainlessā
Hi Katie- what questions do you have? I can share my knowledge or lack of with you. Sorry took so long to respond due to holidays. Im not one to give out my phone number but I will answer you thru this site. Hope you had some enjoyable time over the holiday. By the way my first name is Joli.
Just, what are you doing about you numb arms? What are you doctors saying CAN be done?
I take naproxen for the inflammation in my neck. the doctors want to rule out carpal tune (their favorite go to). My pain doctor agrees the issue stems from the hernated disk at C7-T1. As for surgeons, both my fusion doctor and decompression doctor, say I should not have any more surgery done to my cevical area. I use heating pad, and sleep in a soft neck collar. at times thru out the day I use the collar also. My hands finally won, and I lost my job since I cant type for long, or count money (cant feel the bills anymore), I was an assistant bank manager.
I suggest for you to get an MRI and see if fusion or hernation repair will remove the pinch of the nerve that is causing the issue. An nerve test should rule out the carpal tune and find the nerve that is the root cause also.
good luck to you. hang in there.
Lol! Yeah good ol carpal tunnel. I had the nerve test. They say I have it, but when I get my c spine adjusted with activator method chiropractics, my fingers come back. I have had so many MRIās Iām not sure my electrons will ever be the same!! I am a Labor and Delivery nurse. I see a PT and they have been wonderful working with me through my pain and exercises. I have come to understand my pain and only take Ibuprofen and Tylenol and Ambien for sleep since the pressure, pain, and numbness keep me awake. I have just resolved that this is for lifeā¦I just would REALLY like to keep my job a bit longer, I am only 49 and still have to earn an income!! Do you have EDS? I also have severe brain fog and am wondering what that is about! That is almost more debilitating! Oh, and new onset āAnxiety/Depressionā per my MD.
I have not been diagnosed EDS. As for brain fog, anxiety, depressionā¦I chalk it up to the Chiari. I look at it that the cerebellum has been injured. like if a nerve can have permeant damage so can the cerebellum. (if that makes sense). Like you said, I have just given in that my hands are my new normal! Just learn to live with it and hope the people around you understand! I am 48 and was hoping to work a few more years also (dam bills!). When I was let go end of October, my husband and I took it as a sign. Iāve started the disability processes with all fingers crossed. I can say now that Iām not working, the anxiety, depression, has reduced dramatically! it was getting rid of the stress and the brain fog is basically gone also. like my primary said, stress can/ does causes most medical issues, so reduce the stress and you should feel better. she was more than right! no more heart palpitations. Not sure if you religious at all, but sometimes God works in strange ways, loosing my job due to cognitive issues along with physical ones was a health healing time for me. I do hope you are able to work as long as you need to. Just donāt push yourself over the edge like I did.
little work advice, FMLA- that may help if your having issues with time off to reboot yourself for work. FMLA did help me keep my job for an extra 8 months. Here in Florida it is a right to work state, so they were able to fire me while on FMLA. they just had to build a really good case, before letting me go.
ill send prayers your way!
Oh wow! Idaho is right to work too! Didnāt know they could fire me?? Thought I was protected on my FMLA!! I am going part time in a WEEK!! I do chalk the brain fog Anxiety and Depression up to the job. It is VERY physical and all of my hard work and therapy is damaged in one shift, plus life and death scenarios every day. High pressure.
Did you have the Decompression? I figured once I was decompressed that I wouldnāt have Chiari issues anymore?? Ughā¦ sometimes I wish I had not been decompressed! However the headaches were MUCH worse! That surgery was HELL and now my muscles are SO tight back there. I have been doing PT to stretch them. Sounds like we are very similar.
Yes I was decompressed back in 2016. after surgery I felt normal and wonderful, up to this past year. when I started to decline, I fell hard and fast with all the cognitive issues. It was like a light switch flipped and the light never come back on. when was your surgery? ive been researching and found they are doing studies now showing relapse are apparent in 2-3 years after surgery and they do not know why. again my feeling is we have permanent damage and the brain regresses back after the cut nerves have āhealedā as much as they are going to.
as for FMLA- it only protects to a point. having been a manager, in a right to work state, a manager can find a away to fire you if they want to. I reached out to a lawyer and they said the company was in the right and nothing could be done. Hopefully your manager likes you, understands your medical situation, and works with you. was it your choice to go part time or their suggestion? just asking because in my situation the company showed they ātriedā to work with me by demoting me twice (not cutting my pay, thank goodness) and decided there was no position left that I could do. I suggest looking into FMLA laws more, especially if they suggested the part time. they may be building their case. I AM NOT a lawyer, just speaking from personal experience. this would be a great discussion topic on this site for further information and help. remember you are your best advocate, protect yourself as much as possible. You may want to consider short term disability if your offered that. again suggestion to look into.