Sports have always been a big part of my life—both playing them and watching them. As a native of western Pennsylvania, I am a huge fan of the Pittsburgh Pirates, Penguins, and Steelers. My sister had season tickets to Penguins games, and we often went together, which gave me a chance to wear my extensive Penguins wardrobe. Growing up, I played basketball, soccer, roller hockey, tennis, and baseball. I even pitched for several years on a boys' baseball team.
I started getting headaches when I was in eighth grade, and they continued into high school despite my trying many different migraine drugs. I played tennis through sophomore year but had to stop when the pain became too intense.
By the time I was a junior in high school, I had developed neck pain, muscle weakness in my arms, and seizures. My condition was so unpredictable that I had to be homeschooled during my junior and senior years. A year after graduating from high school in 1996, I had a daughter, Addyson. Four years later I had my son, Noah, and got married. Caring for my children was difficult because I was dealing with headaches and neck pain and juggling working at nursing homes. Fortunately, I could rely on family to help with childcare.
About six years ago, when my headaches became unbearable, I went to see my family doctor, who suspected I had the same condition her sister had. An MRI confirmed that I had the same rare disease: Chiari malformation, a neurologic disorder marked by defects in the base of the skull and cerebellum. [The cerebellum and parts of the brainstem usually sit above an opening in the skull that allows the spinal cord to pass through. When part of the cerebellum extends below and into the upper spinal canal, it is called a Chiari malformation.]
My doctor recommended an operation that creates more space for the cerebellum and relieves pressure on the spinal cord. At a hospital in Pittsburgh, surgeons removed a small portion of the bone at the bottom of my skull and inserted titanium mesh to hold my brain in place and prevent it from falling into my spinal canal.
Almost immediately, my headaches disappeared. But within six weeks, I developed a cyst on my scar that my doctor thought was an abscess. I also began leaking spinal fluid. After further testing, I was told I could have a shunt placed in my head to relieve the pressure, or I could take a drug to reduce fluid retention. I wasn't ready for another brain surgery, so I chose the medication. It worked for about a year until I was switched to the generic version, at which point my headaches and fluid returned.
Three years ago, when she was 20, Addyson was diagnosed with Chiari malformation, which is currently being treated with medication. In 2019, I became a grandmother when Addyson had a baby girl named Oakley.
During the pandemic, I've seen my neurosurgeon once so far. I check in with my primary care physician using telehealth. It's been tough adjusting to a summer without going to baseball games and possibly a year without seeing my favorite teams play.
Despite all these pandemic-related changes, I continue to spend as much time as I can with my children and granddaughter while looking for better treatments, in the hopes that I can get back to playing sports again one day. - As told to Paul Wynn