“I have people ask me all the time how I am and I just say good because it’s easier,” McKinsey Ingle said, as she explained her diagnosis. “Most of the time when people say ‘Hey, how are you?’ they want a short answer and I don’t have enough time to explain everything.”
When McKinsey Ingle was growing up, she thought having frequent migraines was normal – after all, she didn’t know anything different. But when the headaches started getting severely worse in August of 2017, she went to Children’s Hospital in Atlanta and discovered what was causing the headaches.
Dr. Barunashish Brahma diagnosed McKinsey Ingle with chiari I malformation and syringomyelia on February 12, 2018 and sixteen days later, the Calhoun student was preparing for surgery. McKinsey Ingle’s first decompression surgery, which took place on Feb. 28 of last year, was meant to help reduce the size of a cyst on her spinal cord that could cause permanent nerve damage.
So, in line with typical procedure, Brahma performed a decompression surgery and estimated McKinsey Ingle would be cleared to play softball in four to six months. Yet, in August following the surgery, McKinsey Ingle noticed her recovery was taking longer than expected.
Out of her frustration and still-existing pain, as well as the fact that she shares a diagnosis with two of her cousins, McKinsey Ingle and her family decided to host an event to raise awareness about chiari and syringomyelia, but to also raise funds to contribute to cure research.
Diagnosis and treatment
Chiari malfunction is a condition where the lower part of the brain pushes through the skull and presses upon the spinal canal, according to McKinsey Ingle’s mother, Myra Ingle. One possible result of chiari is a cyst is formed on the spinal cord, or syringomyelia, which threatens the nervous system and can cause permanent damage if it goes untreated.
Chiari doesn’t always lead to syringomyelia, but the two conditions are often found paired together. And when McKinsey Ingle was diagnosed with both, the most pressing need was to take care of the cyst and prevent further damage to her nervous system.
When Brahma diagnosed McKinsey Ingle, she was vaguely familiar with the condition, as her cousins Beau Ross, 5, and Greer Matthews, 3, also have been diagnosed with Chiari. But mostly, she said it was nice to put a name with the constant pain she had experienced for so many years.
As Brahma suggested, she underwent a decompression surgery to reduce the size of the cyst on her spinal cord. Throughout the course of his career, Brahma has conducted several decompression surgeries and typically, a year after he operates, cysts reduce by about 93 percent.
But a year after McKinsey Ingle’s surgery, her cyst had only reduced by about 1 millimeter, according to McKinsey Ingle’s father, Ryan Ingle, which is nowhere close to 93 percent of its total mass.
“It’s been really hard because my friends think that since I had the surgery, I’m good now, they think I’m fine,” McKinsey Ingle said when asked about her recovery. “I just didn’t understand why my (healing process) has been slower.”
Brahma was confused about the process as well, as he predicted to be able to clear her to play softball by August. After several appointments with Brahma and a few MRI’s, the Ingles have spent months considering their next plan of action, especially since there is not a developed cure for Chiari yet.
“Our 15-year old has to live with this, there’s no cure yet,” said Myra Ingle. “She can live with this, but unfortunately, she has to live with it. She just wants to play softball, that’s what she wants to do, and she can’t do it the way she wants to.”
Despite the frustration they’ve experienced, the Ingles want to do something productive and make a difference, not only for McKinsey, but for all chiari malformation and syringomyelia patients.
When Ryan Ingle was thinking about his daughter’s diagnosis, he knew he wanted to do something to help McKinsey. Myra Ingle said it has been hard for both her and Ryan to see their daughter experience recurring headaches and physical pain, but about three months ago, Ryan Ingle discovered a way to contribute to the cause.
“It started eating at me probably worse than I realized, and I was really getting down about things,” Ryan Ingle said. “I just started thinking is there any event anywhere, and honestly, the ASAP group was the first one to respond to me.”
The American Syringomyelia & Chiari Alliance Project (ASAP) is a nonprofit organization that was founded in 1988 to raise awareness and funds for researching a cure. To date, the organization has raised more than $1 million for research, education and improving the lives of those who have chiari and/or syringomyelia, according to their official website.
When the organization responded to Ryan Ingle, he jumped at the opportunity to host an event in Calhoun to raise awareness for his daughter’s diagnosis. His plan is to at least host a walk annually, depending on how Saturday’s festivities turn out.
The walk, though it’s not a race, begins at 2:30 p.m. and is aimed to primarily educate the public on chiari and syringomyelia. Besides the walk, there will be a corn hole competition, face painting, dunking booth, live music, a silent auction and food, with the hosts of the event being McKinsey Ingle, Beau Ross and Greer Matthews.
Myra Ingle said there will be cheap concessions and barbecue plates for $7, and the Ingles designed the event to be family-friendly and open for anybody to come.
“That’s what we want to do,” said Myra Ingle. “It’s just a walk to generate awareness to Chiari and other symptoms that go along with it.”
The first annual “ASAP Walk and Roll of Georgia” will be held on Saturday at the Cherokee Capital Fairgrounds, 1060 Liberty Road, from 1 p.m. to around 5:30 p.m. All funds raised will be donated to researching, raising awareness and increasing support for those diagnosed with Chiari Malformation, Syringomyelia and related disorders.
For more information on the ASAP Walk and Roll of Georgia, contact Ryan Ingle at 706-591-0073, Myra Ingle at 706-979-5405 or visit wizathon.com/georgia-asap-walknroll/?id=3932.