Chiari Online Support Group

Getting older with chiari

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 ‘no win, no fee’ 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. I’m 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.
It’s so very stressful my private disability company sent someone to my house. I’m 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 “You are getting what you are getting and that’s all you are going to get…” 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 I’d done it sooner. They took care of everything. I had to attend 2 dr’s 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 professor’s report via the lawyer and got that too, so now I’m 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 :kissing_heart:

I can completely understand and empathise what u are going through and I’m so sorry u are feeling the way u do. A little about my story . I don’t want to say my situation is better in any means… just different.

I’m 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. It’s too vague to characterise it as that now as some “warriors” have certain symptoms of all 5 categories and still be “alive”

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 “sick benefits” 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.

It’s a shame that I feel the need to explain in detail and get medical records to back up the fact I don’t just get “headaches”

Sorry I have drifted what I’m 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. Don’t define urself as this “condition” our brains and bodies just behave differently society needs to catch up . U are still the person u have always been :kissing_heart:If u need advice or support I will gladly give it. Sorry it was so long

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“Ohh, I get headaches too…” the number of times I have heard this line makes me want to scream. This ain’t a headache this is a mind numbing explosion of agony. I’ve 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 “Ohh, I get headaches too…” I lift my hat and say “Not like these you don’t…” The look of shock :astonished: 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, they’d 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 :pray:

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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 ‘normal.’ I did finally win - but with the help of an attorney. When I was applying for disability, I had not yet been diagnosed with Chiari’s. I had only been diagnosed with “Chronic Fatigue Syndrome,” which my attorney said wasn’t on SS Disability’s “List of Disabilities.” That’s 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 don’t know if Chiari’s is on that “List.”

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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 don’t take away my antiinflamitory, and occasionally muscle relaxers. Other than that regular vitamin for us close to 50 year young ladies.
As for SSA, I’m 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. Don’t give up hope!