Keep Calm & Conquer Chiari

This is the first spring in 8 years that I am not posting softball photos of my daughter Gracie. She is actually on a medical leave from softball and PE, and she also had to leave the job she briefly held at Jewel back in January and February. She is a teenager and I just want to state that this update has been posted with her permission. Here is what has been going on:

Gracie was diagnosed with a Chiari Malformation years ago and has been asymptomatic for it her entire life until this past January. You can google Chiari Malformation, but in simple terms this condition results when a small part of the brain extends downward into the space that is only meant to house the spinal cord. In severe cases, a Chiari Malformation can result in pressure injuries to the spinal cord because the brain essentially “plugs the hole” in the skull and the cerebrospinal fluid cannot circulate freely. Because of that risk, Chiari patients who are not showing symptoms are still monitored periodically via MRI. Gracie has been fortunate to have great care at both Seattle Childrens Hospital and Lurie Childrens Hospital in Chicago over the past few years to monitor her.

Info-graphic courtesy of www.conquerchiari.org

Her neurosurgeon back in Seattle told us that 25% of Chiari kids who never had symptoms will start showing them after a concussion. Gracie had a pretty serious concussion in March of 2018 during a high school softball game when she collided at full speed with another player as they were both running for the ball. She then hit her head pretty hard again in December of 2018, though she did not seek medical attention then so we don’t know for sure if that was a second concussion. We are assuming the concussions were the change that sparked her Chiari symptoms.

Chiari Malformation is an invisible illness so if you see Gracie, you might not think she is sick. She goes to school, she does her homework, she hangs out at Starbucks with her friends. She just can’t exercise or play sports right now. Minimizing physical strain and physical effort keeps her symptoms under control, however it doesn’t take much for her to bring on dizziness, severe sharp exertion headache, and nausea. And to make things worse, telling a normally very physically active kid to lounge around and not exercise for months doesn’t do anything positive for their mental health.

Gracie will be taking her finals a week early so that she can have Chiari decompression surgery at the end of May, then have the summer to recover as needed. The decompression involves removing a section of skull and potentially expanding the dura (the casing around the brain) with a patch. She may also need a C1 laminectomy in order to make enough space for her CSF to flow freely. I will be posting an update after the surgery. We can’t wait for her to get back to normal life and to start enjoying the things she loves once again.

 

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