GREENFIELD — Makayla Durick is doing great.
As of Tuesday, the incoming Greenfield-Central High School junior is a charismatic 16-year-old who loves playing softball and spending time with her friends and family.
She is coming off a sectional championship-winning season with the Cougars softball team and could not be more excited about getting back on the diamond with her club.
But best of all, Durick is no longer suffering from any of the symptoms that caused her to undergo brain surgery in 2012.
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“I’m all better now,” she said.
Almost four years ago, though, Durick was far from fine. Her attempt at living life as a normal teenage girl was threatened by a rare brain disorder called Chiari malformation.
Though Durick likely was born with the defect, she did not feel its effects until an accident triggered them in 2012.
At basketball practice during the winter of that year, a ball struck Durick in the back of the head. She could feel the pain almost instantly.
The agony was intense, and even worse, it persisted, she said. All through the night and into the next morning, the throbbing continued.
Makayla’s mother, Shawna Durick, was not initially overly concerned about the pain.
Her daughter had a headache after getting hit in the head with a ball. That makes sense, she thought.
Makayla was not displaying concussion-like symptoms, so she gave her young teenager some aspirin and sent her to school.
However, when the then 13-year-old returned home in pain, her mother knew something was wrong and she made an appointment with a doctor.
Two days after getting hit, her doctor diagnosed her with post-concussion syndrome and told her to medicate as needed.
The next few weeks were some of the worst of Makayla Durick’s life. She went to school and played basketball through not only severe headaches, most likely migraines, but dizziness, neck and back pain, as well.
Her back pain got so bad, in fact, that carrying her backpack became an agonizing ordeal.
“She is such a tough kid,” Shawna Durick said in an online photo blog she created documenting their family’s experience with Chiari malformation. “She still did it all with the help of Motrin.
“We let it go for a while thinking it was post-concussion syndrome, but when it didn’t go away and started happening more intensely, (we went) back to the doc.”
This time around, the doctor ordered an MRI, and it revealed Makayla’s Chiari malformation.
Makayla has Chiari I malformation, the most common type of the brain abnormality. It is a condition in which part of the brain called the cerebellar tonsils breaches a person’s spinal canal.
According to Mayo Clinic, “it occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
Chiari malformation’s most common symptom is headaches, which according to the American Syringomyelia & Chiari Alliance Project, “begin at the back of the head (neck) and radiate upward.” Coughing, sneezing, laughing and many other regular daily actions can cause increased pain.
Double vision, involuntary eye movement, balance and dizziness issues also are common symptoms. However when dealing with the brain, researchers said, symptoms can vary wildly and more than 100 have been reported as being connected to the disorder.
For Durick, though, headaches were the predominant problem and had become the bane of her existence. Quality of life became an issue.
“My once very athletic kid was coming out of the pitcher’s circle in tears in the middles of games,” Shawna wrote in her blog. “Her coaches were having to ask her before games if she was going to be able to pitch or not. Did she have a headache? How bad it was it? So we opted to go with the doctor’s advice and have surgery.”
The procedure Makayla underwent is called posterior fossa decompression. During surgery, doctors removed small bones in her skull and shaved back another. The idea, according to ASAP, is to “reduce compression of the brain stem and allow the tonsils to return to their natural position.”
For Makayla, surgery was a sweet relief. In the weeks that followed, her headaches slowly disappeared, as did her neck and back pain.
Makayla has been playing softball pain-free for most of the past four years. Where once she had to warn coaches she might not be able to finish or even play in games, now it’s not even a thought that crosses her mind.
“I don’t even think coach (Jason) Stewart knows I had brain surgery or about the Chiari,” Makayla said with a smile.
And that’s just the way she wants it.
Well, it was anyway. While the idea for Makayla was to put the disorder behind her so she can live a normal life, she also wants her story to inspire others.
She conquered Chiari. Others can do it, too. The first step, she said, is awareness.
Unfortunately, the defect is not very well known or immediately diagnosed.
That is because the latest Chiari research shows that only one of every 1,000 people has it. The problem with that number, though, is that it often goes undiagnosed.
Because it is a disorder of the brain and the symptoms can vary so tremendously, doctors can have a difficult time pinpointing Chiari malformation when patients describe a wide spectrum of those symptoms.
That has led to people to suffer for years in uncertainty.
Hancock County ASAP support group leader Lori Tutrow said she has fielded many calls from grown men and women who thank her for helping to create awareness about the disease.
After having heard about the disorder for the first time, many of them have taken that information to their doctors, gotten diagnosed and received treatment.
For many, including Makayla, surgery has proven to be the cure she and her family so desperately desired.
But not everyone is so fortunate.
“Thankfully for Makayla, that’s been her story,” said Tutrow. “It’s fabulous for her that it worked out for her that way. But it’s not always the case.”
Tutrow would know. Both of her children — incoming Greenfield-Central junior baseball player Keegan Tutrow and recent graduate Kaylee Tutrow — have been diagnosed with Chiari malformation.
And for them, decompression surgery was only the beginning.
Since his first surgery at age 8, Keegan has had three more brain surgeries. He currently takes a cocktail of medication that adds up to about 30 pills per day.
Unfortunately, unlike Makayla, the Tutrows’ battle with Chiari likely will go on for the rest of their lives.
In 2012, 13-year-old Makayla Durick was diagnosed with a brain disorder called Chiari I malformation. For the future Greenfield-Central High School student, that meant she had a “condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward,” according to Mayo Clinic.
As a result of the defect, Durick suffered severe headaches and back pain. According to the medical site, there are dozens of other symptoms including:
- poor feeding and swallowing
- decreased strength in the arms
- decreased sensation in the arms and legs
- rapid, back and forth, eye movement
- developmental delays
- weak cry
- breathing problems
Because the defect was so clearly affecting her quality of life, Durick and her family elected for her to undergo brain surgery. During surgery, doctors removed a small part of the bone at the base of Durick’s skull to keep it from pushing against the brainstem and spinal cord. They also shaved down another bone to giver her cerebellum (part of the brain) more room.
Since her surgery, Durick, now 16, said she is practically pain free and has resumed her life as normal teenage girl at Greenfield-Central. Durick won her bout with with Chiari malformation and hopes to inspire others to do so as well. The most important step in doing so, Durick said, is spreading awarness of this uncommon defect.
She and her family strongly encourage anyone experiencing the symptoms listed above to see a doctor for an evaluation.
Chiari malformation often can go misdiagnosed or even undiagnosed by doctors, who so rarely encounter it. According to conquerchiari.org, “estimates for the number of people with true Chiari range as high as 500,000 in the United States. A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population.”
So, Durick said, a thorough medical evaluation is crucial in identifying the defect. If you or someone you know is experiencing the symptoms listed above, it is prudent to see a doctor and request an MRI be conducted.
For more important information about Chiari malformation, visit mayoclinic.org, ASAP.org or conquerchiari.org.
In the second installment of this two-part series, incoming Greenfield-Central junior baseball player Keegan Tutrow shows what life is like for those whose fight against Chiari malformation has persisted beyond decompression surgery.