September is Chiari Awareness month.  Each day, I am going to share one person’s journey…in their own words.  Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine.  The symptoms are unbearable, at best, and there is no cure…

Meet Cailyn...

Starting from the day I was taken home from the hospital I have had numerous random symptoms that never truly connected to each other. The first was a kidney infection. Then, as I became a toddler I started to have seizures,  and as I grew into a young child I would have leg cramps and pain that would cause me to drop to the ground. As I got older, the headaches and vomiting started to increase rapidly. I had every test there is relating to the nervous system and digestive system. After an MRI in fourth grade, my pediatrician called my mom and told her I had something called Arnold Chiari Malformation. My family had never heard of it, but we were referred to a pediatric neurologist in Southern Maine. We hit a major dead end at that visit. None of the information he was giving us was consistent with  the information my parents had been researching. My mother found “The Chiari Institute” in Long Island, which is a world leading office for Chiari patients. We traveled down to see what they had to offer and were blown away. We spent the entire day there meeting with many medical professionals including a neurologist and a neurosurgeon. They informed us of exactly what Chiari was and how it can be helped. It was a long day, but a day full of relief. They were the first doctors who truly understood my pain and symptoms. I would start off by trying different medications to reduce the pressure. Those all came with different side effects including a severe allergic reaction. All in all, none of the medications or therapies helped with the headaches. I continued to travel down to “The Chiari Institute” every year and the result was always the same: no surgery! Late elementary school and junior high was really the height of my pain and sickness. I would vomit nearly every morning before school. I wouldn’t leave the house for school until I vomited as I knew that I would vomit at school if I didn’t at home. My headaches were constant. I wouldn’t be able to do anything without asking my best friend to help “pull” my neck or needing to put my chin on my neck. I was a very active child in and out of school, but at times my headaches would cause me to have to sit out of things; especially gym class and other sports. I always tried my hardest to not miss a day of school. When I was nearing the end of my junior high years, things kept getting worse. I was unable to function in day to day life. I was missing out on activities because of the pain, but that was the least of the doctor’s worries. They were concerned about the fact that I was not getting the correct nutrition from my food because I was always vomiting. My esophagus was getting burnt, and causing pain while swallowing and breathing. I went down to New York in late March of 2012 (my 8th grade year) and was told it was time for surgery. This was truly exciting for me, even though it would be a long road to being pain free. I would be having a Posterior Fossa Decompression and Cranial-Cervical Fusion or in layman’s terms the bottom of my cerebellum would be cauterized and taken out, along with my skull, C1, and C2 being fused together. This surgery would take place in May of 2012 at Long Island Jewish/ North Shore Medical Center. I would be in the hospital for a total of eight days and would have to stay at the Ronald McDonald House for a few more before traveling halfway home and staying for a night to ensure that I was making the trip without harm. I will always remember the feeling I had when I saw the exit for my house on the interstate. I had never been so happy to be home and to start the real journey to recovery. 

I had to miss the last month and a half of school, which may sound like fun but I can reassure any child that they will miss school incredibly when they can’t go. My goal was to start high school on time and normally (even if I would have to wear a neck brace until October!) There were a few rough weeks that caused some phone calls back and forth with New York, but overall, I recovered well. The totally recovery time is said to be about a year, but patients always say it’s more like three before you feel great. I would have to agree with the other patients. It was a long journey. Since my headaches and pain have gone away, I’ve only had small medical problems but nothing serious. My quality of life has completely improved since my surgery.
Cailyn 2
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Even though I have Chiari and had to deal with all that comes with it, I would not change it. It has given me more than it has taken. Chiari made me who I am and confirmed what I want to do with my life. Now, I am currently a sophomore at King’s College in Wilkes-Barre, Pennsylvania. I am in a five-year accelerated BS/MS Physician Assistant program, with hopes of working in Pediatrics in some capacity. I am hoping that my story will give hope to younger kids or anyone else with Chiari who are struggling with the pain and surgeries.