For most of her time at Post Falls High School, Shaylee Bernhart was a typical band geek, playing multiple instruments in various bands. Music filled her life, until the crushing headaches began last fall.
Her headaches also came with vision problems and dizziness. What she could see looked like the black and white static from an old-fashioned television. When the pain and vision problems hit, Bernhart would have to have a friend lead her to the school nurse’s office. The symptoms would stop when she went to bed, then start up again in the morning.
“It was the same thing over and over and over again,” she said. “There were definitely a lot of nights when I was sobbing at the table doing my work, in pain.”
Doctor visits and tests led to a diagnosis of Chiari malformation Type 1, when the skull is too small for the brain and the brain begins to slip down the spinal column. It’s usually present at birth, but it can take years to develop symptoms and some people never have symptoms. The only cure is brain surgery that involves removing a section of skull to make room for the brain.
Bernhart’s herniation into the spinal column is 5 millimeters, the minimum required for a diagnosis of Chiari malformation. She’s on medication to keep her spinal fluid pressure down and Bernhart said her neurologist isn’t sure if surgery will be required. “That’s OK, because I don’t really want my brain to be cut open,” she said.
However, the medication she takes causes tingling in her hands and feet, which creates a pins and needles feeling while playing a musical instrument. An eyelid twitch also makes it hard to read music. She’s struggled to keep up in school and any sort of physical exertion can lead to debilitating headaches and can keep her in bed for days.
She started playing the flute in sixth grade, later adding the trombone. She played in the concert band, jazz band and the wind ensemble. “I like the people in band,” she said. “It’s a fun environment, kind of like a family. At one point I was in three band classes in one semester. My face was tired by the end of the day.”
Teachers and staff at her school have noticed Bernhart’s struggles. Counselor Allison Vanlandingham said she was impressed that Bernhart is still coming to class and participating in school even as she struggles with daily pain.
“Not only that, but she is among the top-ranking students in her entire graduating class,” Vanlandingham said. “Shaylee has had to wrestle with the potential for open brain surgery when her peers are thinking about prom and what dorm they are staying in their freshman year of college. Through all of this she has remained true to herself and the person she has always been.”
As she prepares to leave high school, Bernhart is also trying to come to terms with what her diagnosis means for her future. Light and sound make her headaches worse, but she’s reluctant to give up the music that has been a daily part of her life for years. She recently started learning the ukulele, which requires less physical effort than a wind instrument.
“It’s hard to play now with my migraines,” she said. “I don’t want to say I’m giving up playing, because I don’t want to.”
Bernhart plans to attend BYU Idaho and study elementary education so she can be a teacher. “I love being around kids,” she said. “Their minds are so cool to me.”