Hi, I am Kat and I am living with ACM (Arnold Chiari Malformation) better known as Chiari. Any donations will go towards my appointment August 12th, with a specialist in Ohio. While I have decent medical insurance, the trip from Oklahoma is going to cost alot! Please help by giving any amount and or sharing this link with everyone and everyone you can.
Top photo is a normal brain MRI / Bottom is Kats brain MRI
My Life Story...In the making. My name is Kathleen Kocel, I have been diagnosed with Arnold Chiari Malformation. For those of you who don't know what that is, It means my skull is to small so my brain hangs down. What is inside my skull is all smushed together which is compressing my brain stem and blocks spinal and blood flow.
Chiari is a rare birth defect. I had minimal symptoms until 2010, when I was involved in a side impact car wreck. I went from working Manual labor as my job, dancing and modeling, to having more and more symptoms that I couldn't explain. Doctors didn't understand or believe what I was trying to relay to them.
After an "Episode" at my moms house where I was just walking through her kitchen then I woke up on the ground and could not make my words come out of my mouth correctly, everything was scrambled and I could not make since of what my mom and sister were doing around me. She quickly called 911 and we ended up in the ER with a young doctor who had just studied Chiari Malfomation. He was shocked and interested to have spotted the condition.
I am not going to lie, just finding out that the pain I had been feeling was not just in my head. There was a weight lifted off my and my familes shoulders. Only then did I begin to face the monster of actually getting care for my malformation.
I had to quit my job, which made matters worse by losing my health insurance. I filied for disability to try and lift the burden of the finances off my family and my husband, but i have been denied three time. The last time i went in front of a judge i was only one month post op. I was left to face this condition on my own. I suffered through a grueling two years dealing with extreme head and neck pain, numbness, dizzness, insomia, balance issues, vision and hearing lose, until i lost 75% of my peripheral vision and realized from the pressure build up in my brain that i could not wait any longer for medical help.
I was able, with the help of my primary care doctor, to get qualified for charity care through the local hosptial in Tulsa. We were refered to a neurosurgoen, when in May 22nd of 2013 I had a procedure which reduced the amount of pressure in my skull. Basically, a part of my skull was removed as well as shaving down my top vertebre, he also cut a band of scar tissue that had formed like a rubberband around the bottom of my brain, to make more room for my brain. After a second surgery, the doctor became very aggravated and told me " I Cured Your Condition" and would no longer be my doctor. Not knowing where to turn I began to research Chiari.
This is how I found Mayfield Chiari Center in Cinncinati OH. I am hopefull, with finally getting an appointment set for August 12th drawing near, I am still not sure what to expect. Regardless of mounting symptoms, different medication, another surgery, and possible addition of EDS (another complicated condition), I am willing to endure all of this because my quality of life is not accepable. I am ready to fight to be able to drive, go to a movie in a theater, shop in crowded stores, watch or be near fireworks, dance (even just for fun around the house), Vaccuum and the list of things go on for while, I will spare you the rest but i'm sure you get the point. I know I will never be able to do things like ride on a bike with my husband or ride a horse or a rollarcoaster. There are a few things like watching Tv or even talking and looking at my phone that are not possible most days. My husband, of two years but best friend for 6, Works nonstop to provide everything since I am struggling to simply get through the day. Money is always tight, we can deal with that, but the mounting medical bills and the up coming trip to OH seems impossible without help. I am setting up this fund raiser to help ease the pressure on him having to come up with the money for me to get to Ohio.
Driving from Oklahoma to Ohio is going to take several days, since I can not ride in a car fore very long. So we are going to leave early and go as far as I can each day. Once there I will be doing a CINE MRI and a CSF Flow Study, then a few hours later I will have my appointmente with an actual Chiari specalist the same day. I will have co-pays, food expenses, the cost of hotels and fuel that I will need to come up with soon. I am not sure how much it will take so I just set a number and hope that it will be enough. Anything that is not used with be donated to www.Chiariangels.org an amazing charity that helps other people with Chiari which I support one hundred percent. Please donate to my Kat's Kickin Chiari fund for any amount or just Please Share this with anyone and everyone you come across to help me get to this specialist and get to a better quality of life.
Thank you so much for taking the time to read about my daily life and stuggles, as well as my goals. God Bless and thank you for your prayers, thoughts, well wishes and donations if you can.
Kathleen Miller Kocel
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