In October 2015, on Columbus Day weekend, an MRI scan confirmed a theory that doctors, my family, and I had for close to four years. I was diagnosed with Chiari Malformation. I started jumping up and down, super excited. My neurologist was smiling, thrilled that he was right about me having this. My mom was incredibly happy and could not stop smiling. These are highly atypical reactions to finding an abnormality in the brain, but we were so happy to finally have an answer as to why I had seemingly developed neurological issues out of the blue.
Chiari Malformation is a neurological condition that basically means that a person has too much brain to contain. Other simple explanations I use include that my brain is trying to escape, my brain fell out of my head, and my brain fell down. In medical terms, Chiari Malformation occurs when brain tissue expands into the spinal canal, due to a smaller skull. Functions controlled by the occipital lobe of the brain are affected, such as vision and balance. Chiari can be congenital, though symptoms can be developed later in life, and it might not show up on a MRI at first.
Symptoms can be very different, depending on the person. One of my friends is completely asymptomatic, and the doctors found the Chiari when they had a MRI for another reason. Another one of my friends lost their ability to walk due to their chronic pain and balance issues, and uses a wheelchair. For me, my Chiari Malformation causes chronic, constant pain, spasms, and chronic migraines, as well as major issues with my eyesight. I also have issues with balance- I walk differently than normal, and my running can be best described as trying to walk across ice.
One of the most common questions is if there is a cure. While symptoms can be managed, the main “cure” is brain surgery. At this time, I have been told I am not eligible to receive brain surgery (if you are a neurosurgeon who disagrees with this, please contact me!). Luckily, the condition is not life threatening, although the person may be prone to developing life threatening conditions such as a syrinx.
While it is an uncommon condition, there are about 1 in 1000 people with it. I have been amazed to meet people that have the same condition as I do, although none of them have had the same vision complications as me. There are some days when the pain is extremely bad, but for the most part I am able to function through it, though I do crash at the end of the day.
I am extremely lucky to have a name for my symptoms, and to have an amazing neurologist who knows a lot about the condition as well. After years of searching for a diagnosis, I am happy to say that I have Chiari Malformation.