During competitive cheerleading in the seventh grade, current freshman Macie Painter began experiencing severe headaches. She first assumed they were just migraines. When she wasn’t finding any relief from her pain, she began to feel that something was wrong.
Reaching her diagnosis was neither a quick nor easy process.
“I actually went to a lot of different doctors,” Painter said. “I had family doctors, physicians, and then when I finally got my neurologist, she’s the one that ended up sending for the MRI, which took a long time. That’s how I ended up getting a diagnosis.”
After years of pain and a long road of doctors appointments, Painter reached an official diagnosis. It wasn’t migraines.
“I have what’s called a chiari malformation,” Painter said. “It’s a deformation in my skull and my brain. My brain was kind of slipping out the back. It was pushing down on my spinal cord, so there wasn’t very much room.”
After being diagnosed with chiari malformation during February of her eighth grade year, Painter began learning about what her condition meant.
“It’s actually a lot more common than everybody thinks it is,” Painter said. “A lot of people end up just being called a “migraine person” and no one ever really understands that it’s what they have.”
Nearing April of the eighth grade, two months after her diagnosis, Painter went in for her first surgery.
“It was called a decompression,” Painter said. “They take out a little part of the skull in the back and that opens it up to push the brain up a little bit and give it more room. I have a scar in the back of my head from that.”
This was the first of two surgeries that Painter went through.
“The first one was a lot scarier for me because the only thing I had before that was my tonsils out,” Painter said. “When you hear the words “brain surgery” it feels really big and really scary. But I had a whole community with me that was really helpful.”
After the surgery was over, Painter quickly realized that something was still wrong.
“I tried going back to cheer and [the surgery] just didn’t work,” Painter said. “I kept having more pain. It normally does, but my [chiari malformation] was so severe that it didn’t help. It actually kind of made it worse.”
After an agonizing process of revisiting doctors and reviewing information, Painter went back for a second surgery last August.
“I got a spinal fusion, so I have rods and screws,” Painter said. “Part of the skull deformation was that it was too far forward, so they pulled it back a little bit and re-fused the bones so it was able to actually help.”
Painter was looking forward to starting show choir as a freshman. With this surgery, however, she experienced a setback.
“I don’t have as much movement side-to-side especially and a little up and down because the bones that were fused are the ones that are used to turn your head,” Painter said. “That was for sure scary going into the show choir knowing I wouldn’t have that full movement.”
After going to physical therapy for a long time, Painter was thankfully able to gain a lot of her movement back. The time off from cheer, however, left Painter with hoops to jump through.
“I lost a lot of flexibility,” Painter said. “I lost a lot of strength because of how much time I was out, so it’s been taking a long time to get all of that built back up. It took awhile to get back into school especially because I missed so much of the beginning of this year. I was at school for the first week, and then I was gone for a long time. It took awhile to get all of my work caught up because I’m in all honors and AP classes. That just caused a lot more stress on top of trying to make myself feel better because my health comes first for sure. That added a lot of extra stress, but I was able to overcome that through my family and my community. Everybody was so supportive.”
After getting through the hardest part of her chiari malformation journey, Painter looks back on it all.
“It actually was a really long journey since I had the headaches for a year before finally getting that confirmation, and then the surgery in April, and it didn’t work, and then the one in August and coming back from that one was definitely harder than coming back from the one in April because at the point I had been out of cheer for months so I had lost a bunch of flexibility.
Through everything she went through, however, Painter said she recognizes those in her life that helped to guide her through it all: her community, her family, and her mom.
“She was going through it as much as I was,” Painter said. “I know having a kid that goes through something like that is really hard. It was really hard for me to see her go through that, probably even harder than it was for myself. She was my rock, my biggest supporter. She’s just my biggest fan, my biggest supporter. She was just always there for me.”
Painter has come through more adversity than most freshmen. Looking toward the future, Painter doesn’t foresee any more surgeries, as her last was successful. For now, she says she is grateful for her recovery and for the people she had by her side the whole way.
