Meet Chiari Warrior – Kaitlyn Green
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…
My name is Kaitlyn Green and I’m 16 years old. I'm a junior at South Portland High School. I have Chiari Malformation, EDS and Dysautonomia. I was diagnosed with Chiari Malformation when I was 3 years old and was having drop attacks. My parents took me to a neurologist and he said I had a brain condition called Chiari. He told my parents that it wouldn't affect my life, but boy was he wrong. I was okay for a couple years and was able to live a normal little kid life. At the end of my time in 3rd grade I started having these weird symptoms like not being able to swallow and really bad headaches. I was in and out of the hospital a lot during that time, due to the fact that I wasn't eating. The doctors thought I was anorexic and made me do therapy. When I could choke down a shake everyday the doctors let me go home and I lived like that for months. By this point my parents and I were desperate to find somebody that could help us, so we traveled down to the Boston Children's Hospital where we saw a neurosurgeon who again told us that the Chiari wasn't a problem, so we went back home. I dropped down to 40 pounds at the age of 10 and it was absolutely terrible.
One day my parents were talking to somebody in the neighborhood who was a surgical tech and worked with a neurosurgeon in Scarborough. Shortly after hearing about this surgeon my parents got me an appointment and the surgeon told us that it was in fact the chiari that was the problem and that I needed to have surgery right away. Two weeks later I was at the hospital having my surgery. It was really scary, I was only 10 and didn't fully understand why I was having this big surgery but my parents helped me understand and helped me cope. The neurosurgeon did a laminectomy, brain tonsil cauterization and duraplasty. After the surgery, I got better in a matter of months and was able to go back to school in the 4th grade.
I had a really good time from the time I was 11 to 15 but then more problems started happening and we knew right away to get a good doctor to help us. We found a neurosurgeon in New York that specializes in Chiari and went to visit him. I was having really bad pressure so they gave me a spinal tap which came back normal but leaked and I had to get a blood patch. I was never really okay after that but I continued to go to school and try to live as best as I could. The summer came around and I did normal teenage things like hanging out with friends and doing activities. Near the end of the summer however, I was still feeling terrible and the neurosurgeon decided we should try invasive cervical traction.
We traveled down to New York again to have the traction procedure and it was awful. If you don't know what invasive cervical traction is, it’s when they insert a kind halo into your head while you're asleep then wake you up. When you've woken up they put all different kinds of weights on a pulley and attach it to the halo. I’ll skip most of what happened during the surgery but I will say that I screamed in pain the whole time. My Retroflexed Odontoid was stable enough to not need a cervical fusion at that time.
I celebrated my 16th birthday with a close friend of mine that has always had my back even at my worst and all was okay until the winter of 2016. I missed a lot of school and went 2 days from January to June. I was diagnosed with Dysautonomia, which is an autonomic dysfunction. Your autonomic nervous system is what regulates the functions of our organs such as the heart, stomach and lungs. For me, heart rate, breathing and ability to stay hydrated are most affected.
We found a chiropractic neurologist in Portland and I got better really fast. One way to help Dysautonomia is to do something called tilt table therapy, which is literally a table that tilts up and down. I've been doing that treatment for 3 months and have been able to control my heart rate and have been feeling really great.
I started my junior year a couple days ago and have been able to go to school all day and even do one of my favorite activities, which is marching band. I'm turning 17 in a month and I’m so excited to be continuing the tilt table treatment and living my life to the fullest.