For the most part, Carson King is a pretty typical teenager. She attends Crest High School, enjoys going to church and from the time she was old enough to learn them, she’s held a healthy love of dance and gymnastics.
But she’s also something of a medical mystery doctors from around the state have yet to figure out.
For most of her life, Carson has struggled with regular headaches. Nothing painful, usually cleared right up with a bit of Tylenol and often attributed to her being nearsighted.
But in August 2019, the teen began experiencing long, painful headaches on a near-daily basis. And her usual remedies weren’t enough to make them stop.
“On the pain scale, was about 8-10. It was a throbbing, whole head pressure, if that makes sense,” she said. “I would come home from school every day and go straight to bed, so I got behind on my work and it was just a mess.”
Carson spoke to her mother, Danielle, about the headaches and while she initially attributed them to a combination of the stresses of being a teenager and her vision problems, Danielle made her daughter a doctor’s appointment just to be safe.
But before they made it to that appointment, Carson said a knot appeared on her head, a development which had her appointment moved up a few weeks. Then her hair started falling out.
“I called the doctors back after that, and they agreed to see her the next day,” said Danielle.
NORMAL FUNCTION, ABNORMAL FEATURES
That visit did little to reveal what might be causing King’s headaches. Nor did the next, or any of the ones after that. Doctors in Shelby, Charlotte and Chapel Hill all had appointments with King and still none were closer to figuring out what was bothering her.
“She’s had MRIs, MRVs, MRA, multiple lumbar punctures, CT scans, genetic testing, extensive lab work,” said Danielle.
All of those tests came back with a diagnosis of normal function, abnormal features. And still the headaches persisted.
“We went to so many places I think by the end of it I told my mom, ’Do you think they will say something different today or say they don’t know?” said Carson. “I just didn’t want to be disappointed.”
One doctor did detect a number of small holes in Carson’s skull, a condition known as multiple parietal foramina, but that is not known to cause headaches like what she experienced.
“The doctors kept saying they’ve never seen anything like it,” said Danielle.
In her gut, Carson said she thought those holes might be the root of her problem.
“I just couldn’t get the doctors to see it,” she said.
Eventually, she was referred to a specialist in Winston-Salem, who was finally able to provide some insight on her condition.
It was there doctors were able to diagnose that, underneath those holes in her skull, parts of Carson’s brain was coning upward and against the skull. But even that created almost as many questions as answers.
“It’s kind of a question of what came first, the chicken or the egg,” Danielle said. “We don’t know if (the coning) is happening because of her parietal foramina or if the holes came from the brain coning up and rubbing against her skull.”
ON AN ADVENTURE
While her daughter recalls some feeling of frustration at her multiple visits with doctors, Danielle said it was during those trips she gained a new admiration for her child.
“I’ve never met a child or teenager so strong,” she said. “I would be upset and she would just say, ‘It’s OK, we are on an adventure.’ I have been so inspired by her.”
The King household is one centered around faith. Throughout her yearlong journey to find answers about her condition, Carson was uplifted by support from her community and her church.
As a show of support for the family, staff at Township Three Elementary School, where Danielle works, began making and selling teal T-shirts with the words “Carson Strong” across them.
The effort quickly spread outside of the school, and several hundred shirts have been sold to support the family.
“The prayers and support have meant so much. If it wasn’t for those, we wouldn’t have been able to get through this,” said Danielle. “Words can’t even describe it, a thank you doesn’t even do it justice.”
QUIET AND PEACEFUL
In early May, Carson’s adventure landed her on an operating table for a risky surgery to repair the holes in her skull, primarily using bits of bone from another part of her skull.
“They did the surgery not knowing if it would fix the problem. They knew there was a problem, but it didn’t make sense that this would cause headaches. Carson told them if there is 1% chance it will fix me, do it,” said Danielle.
A few weeks after her surgery and she said she was, for the first time in a very long time, headache-free.
“After we left the hospital I had my first good day and realized I didn’t have any headaches anymore,” she said. “I don’t know how to describe it. It’s just quiet. It is peaceful. There’s no pain in my head or anything like that.”
As she adjusts to life without constant headaches, Carson still has a long road ahead. Recovery from the skull reconstruction is expected to take more than a year, and there is always a chance her headaches could come back.
For now, Carson remains optimistic. Over the last two years she’s had to give up nearly everything she enjoyed doing before her headaches, as doctors warned any trauma to her head could kill her.
“I want to get back to dance and gymnastics,” she said. “That is my main goal now, if doctors will clear me.”
In addition to shirt sales, the staff at Township Three has created a GoFundMe to help the King family cover medical expenses.