Chiari Malformation
They call us “Chiari Warriors” for a reason - Ella
.jpg "Chiari Malformation")
image by: Chiari Malformation Awareness
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Hattie's Arnold Chiari Malformation diagnosis story
I was a normal 13 year old girl, I loved school and my teenage life was just beginning. I didn't really have a care in the world (apart from trying to steal all of Georgia's make-up and clothes). Everything was changing at this time in my life; I was really starting to grow up. In 2010 I started to get horrific headaches and begun to notice that my balance was getting really bad… ‘Oh it's just hormones!’, I always said to myself.
But then weirder things started to happen to me and I asked myself: ‘why can't I swallow properly without choking?, why do I have disabling headaches countless times a day?, why am I throwing up every morning?, why can't I walk without nearly falling over?,…
Resources
How I’m Surviving A Very Rare Disease
In August 2008 I was diagnosed with Chiari malformation, which in turn caused Syringomyelia and Hydrocephalus. My doctor, who had not encountered this illness before, gave me a Google printout to read further.
Living with Arnold Chiari Malformation and Syringomyelia
There are still many side effects from the surgery and there are things that I have had to change in my daily life that I can no longer do. I still have almost daily headaches, but now they range in severity and aren’t always migraine-like.
Will I Be Paralyzed Like My Mother Once Was?
Sometimes referred to as Arnold-Chiari syndrome or more simply as Chiari, the condition that befell my mother is one in which a defect in the lower-back part the skull causes the cerebellum to squish toward the spine, thus causing increased pressure both in the brain and on the spinal cord.
A letter to a healthier me
It's hard to emphasise how tough it is to live with a neurological condition or chronic illness. It's impossible to articulate the impact it can have on your emotions at times. As much as you try to live your life despite of the restrictions and obstacles, there will always be a part of you that longs for your old life.
Chiari I Malformation
Chiari malformation (key-AR-ee mal-fore-MAY-shun) is a condition that causes the cerebellum — the part of the brain that controls coordination and muscle movement — to push into the space normally occupied by the spinal cord. Most kids who have it are born with the condition, but some develop it as they grow. Many kids with a Chiari malformation aren't bothered by it and have no symptoms. But for some, the condition can cause headaches, balance problems, and other symptoms.
Chiari Malformation Fact Sheet
Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM).
Chiari Malformation in Retrospect
So here is an important message to others who are suffering from this dreadful condition: You are so much stronger than you think, just for getting through life day by day.
No more surgery was the best and worst news
The truth is, this condition is forever and it has never really hit me like it did on that day.
Wheels and Wags
Emily Scriarretta is an extraordinary young woman. One morning ten years ago she stood up and fell to the floor. When she went to stand up her legs went in opposite directions. She couldn’t walk. The diagnosis was tethered cord syndrome and Chiari malformation. The Chiari malformation required her to have two brain surgeries. She would never walk again.
WTF is Chiari?
That’s a damn good question! Hi everyone, my name is Ella, and I was born with a somewhat rare brain condition called Chiari type I malformation. Unless you’ve known someone personally affected by it, there’s a good chance you’ve never heard of this problem.
Hattie's Arnold Chiari Malformation diagnosis story
I was a normal 13 year old girl, I loved school and my teenage life was just beginning. I didn't really have a care in the world (apart from trying to steal all of Georgia's make-up and clothes). Everything was changing at this time in my life; I was really starting to grow up. In 2010 I started to get horrific headaches and begun to notice that my balance was getting really bad...
Bobby Jones CSF
CSF is a non-profit organization that was founded in October 2007 with the goal of raising awareness and finding a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders.
Chiari Fund
Chiari Fund is a nonprofit organization that is dedicated to helping those in need who have Chiari and/or Related Disorders.
Chiari Sisters
Welcome to Chiari Sisters. We are two sisters who both live with a serious rare neurological condition called Arnold Chiari Malformation. We have decided to create a blog to help support and inspire others living with an invisible illness or disability. We hope that by sharing our journey we will encourage you to share yours and in doing so we will gradually build a world of understanding and support for everyone our there silently suffering.
Chiari-Life
I was diagnosed with Chiari Malformation and Syringomyelia in 2003, I was 15 years old. I had decompression surgery that same year.
Conquer Chiari
The C&S Patient Education Foundation is a 501(c)(3) non-profit organization dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research. Conquer Chiari is our informal name, our goal, and our website.
Dave's Big Brain
My Chiari Malformation journey
It's All in my Head
My life with Chiari malformation.
Living with Arnold Chiari Malformation Type 1 (ACM1)
This is blog focuses strictly on living with an uncommon and silent disease. I am going to use this to catalog symptoms and my everyday emotions of dealing with Arnold Chiari Malformation Type 1.
My life with Chiari Malformation Type I
This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.
Rebecca's Brain
This blog is about my individual journey with Chiari and all of its related disorders. I also hope to provide some helpful information along the way.
Spinal Cords Gone Wild
My experiences with mysterious, painful, Syringomyelia (SM), as well as resources for others with SM, Chiari, (Occult) Tethered Cord Syndrome, and related disorders.
The Chiari Institute
The Chiari Institute is the world's first comprehensive, multidisciplinary center for the management of patients suffering from Chiari malformation, a rare structural condition that affects the cerebellum; syringomyelia, a chronic disease of the spinal cord; and related disorders.
American Syringomyelia & Chiari Alliance Project
To improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure.
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