I have two sons who have Chiari malformation. What a ride we have been on with this condition. Jacob, now 15, was diagnosed at 14 months old. Dylan, 12, was diagnosed at 10 months old.
A Chiari malformation type I happens when the lower part of the brain extends beyond the base of the skull and crowds the spinal canal. Sometimes it doesn’t cause any symptoms at all. Other times, symptoms can be so severe that surgery is needed to correct it. That was the case with us.
While Jake and Dylan had the same condition, their paths have not been the same. They both had decompression surgery to correct the malformation, but they had very different symptoms. Fortunately for all of us, what has been similar is their outcome: They are now free of pain and have been able to live pretty normal lives as typical rambunctious, active boys.
Before Diagnosis
Jacob was the first of my four children. He was a fussy baby, and I was a new mom who felt pretty clueless (don’t we all?). I didn’t know what “normal” was for newborns. Are they supposed to cry all the time? Are they supposed to not sleep, EVER? For a while I tried to get myself to believe it was colic. But my husband Jim and I got to a point where we thought it was more than that. I realized that Jake didn’t so much cry as scream. All. The. Time.
It turns out, he was screaming because he was in pain. Once he was diagnosed, we discovered he likely had been born with Chiari and had been having symptoms since birth. Our sweet baby boy had been doing his best to tell us for months!
With Dylan, who came along three years after Jake, I watched him like a hawk. I was convinced early on he had Chiari too. But his symptoms were different. He would gag on anything that went into his mouth. As soon as he started to crawl, he dragged his left leg. Our neurosurgeon confirmed our fears: Dylan also had Chiari malformation.
Off to the OR — Several Times
Jake and Dylan both had decompression surgery, where a small section of skull is removed to open up more room for the brain. They also had other related surgeries to take care of scar tissue build-up, bone re-growth in the skull, and other stuff I’d rather forget. While eventually the success of the surgeries became evident, it wasn’t like an overnight miracle cure for us. Jake’s symptoms came back two months after his first surgery. Dylan developed severe leg pain after his second surgery. Recovery from the surgeries really took a lot out of the kids – their necks were incredibly sore for quite a while.
But, as we attacked each of their issues, the boys both showed progress. Sometimes it was quick — like when Dylan started walking a week after his first surgery just before he turned 1. Other times there were setbacks — like when Jake didn’t walk at all for two weeks after a surgery that involved his spinal cord. It’s been a journey with both of them. We had some scares — some really serious scares — but in the end, we’ve received such wonderful rewards.
Life After Surgery
Fast forward more than 10 years. My boys are now in middle school and high school. They both play football and basketball. They’re good students. They’re full of life, and they’re pain free.
Because there are so many uncertainties with this condition, I think every child’s experience with Chiari is probably different. If you’re preparing for decompression surgery for your child — or are in the midst of it right now — your story might be very different from ours. But I hope our story will help you understand and be prepared for the ups and downs that come with this condition. And know that when you get to the “up” part, it is so, so good!
If you have questions, or would like to request an appointment, please contact our Division of Neurosurgery.
My daughter underwent her decompression in 2012 at age 6, Dr. Stevenson from cincinnati childrens saved our daughter’s life. Faith is now a happy 10 year old,but we fear everyday something could go wrong because as you said having a child with Chiari is a rollercoster but when it is up it is so amazing! Thank you for all that you and your family do to help raise awareness and research for chiari. We are proud chiari parents and our daughter wears her scar like a badge of honor because as she says “I kicked chiari’s butt”