ST. LOUIS, Mo. -- Chiari malformations are structural defects in the skull that can cause serious problems. These malformations are thought to be rare, affecting about one in one thousand people. But new and improved diagnostic imaging suggests it may be much more common than previously believed. Ivanhoe caught up with a courageous teenager who is doing all she can to fund research for this condition.
Cameron O'Keefe doesn't take moments like this for granted.
"There's not a day, there's not a minute, that goes by that I'm not reminded about what I've been through," Cameron told Ivanhoe.
As a young girl, Cameron developed severe pain in her side and numbness on the left side of her body.
Cameron continued, "I put my hand under hot water and I couldn't feel it with my left hand."
After too many doctors couldn't tell her what was wrong, she found Doctor David Limbrick.
"I was told I had to have brain surgery like two weeks later. And, I was 11," explained Cameron.
She had Chiari malformation. A portion of her cerebellum had come through the base of her skull, into her spine.
David Limbrick, MD, PhD, Chief of Pediatric Neurosurgery at St. Louis Children's Hospital, said, "It can be associated with the collection of fluid within the spinal cord very commonly and that can cause problems."
Problems like numbness, tingling, severe pain, headaches and deformities like scoliosis. Decompression surgery can help.
"Where we remove the back portion of the frame and magnum, which is the base of the skull and, as necessary, the back portion of the upper bones in the neck," Dr. Limbrick continued.
Before surgery, Cameron's spine was filled with fluid. After surgery? It's gone.
Dr. Limbrick shared, "The goal is to treat them early enough where the numbness improves, or the pain improves, or the weakness improves."
"I feel great. I'm so thankful for it," Cameron said smiling.
To show her thanks, Cameron published a book of uplifting quotes last year. She did the artwork herself. She's sold more than 100 copies. She's donating all proceeds to Dr. Limbrick's research. She wants kids like her to know they're not alone.
"I wish I could give the book to me, 11-year-old me," said Cameron.
Cameron is now chasing her dreams at Savannah College of Art and Design and she's already working on book number two.
The Little Book of Simple Sayings is Cameron's book and it is available on Amazon for 24 dollars. A large randomized clinical trial is currently underway to figure out which of the two primary surgeries for these malformations is the most effective for patients with the least side effects. Other research is looking at what genes are involved so doctors can better understand the history of the condition and who will best benefit from surgery.
Teen surgery patient gives back in a big way
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