Chiari Malformation is a brain condition you may have never heard of. Yet, according to a local Neurologist, it affects one in about every 100 to 200 people.
We sat down with a patient who was misdiagnosed for years to tell her story.
Sarah Taylor has lived in Bismarck her whole life, and she’s a single mom caring for her three kids. For years, Taylor has been through the wringer, trying to figure out what was causing her intense pain.
The Chiari Malformation patient shares, “I get these awful headaches that start like at the back of my skull, and it radiates to where my eye is and it feels like my eyeball is being pushed out of my head.”
She’s been told it was migraines, and when that medication didn’t help, she was diagnosed with Multiple Sclerosis for three years.
Taylor explains, “I was having what I thought was relapses because I would lose the ability to walk. Like my body just went completely numb. I’ve got pain in my back, the headaches got worse.”
And, it’s not easy to diagnose right away, because the symptoms can be so different from person to person. The only way to identify it is through an MRI.
And even then, Taylor says she had to finally be referred to a Neurologist who knew what to look for, and then she found out, she had a Chiari Malformation.
Sanford Neurologist Dr. Jess Miller explains, “Chiari Malformation is a congenital mismatch between the size of the back of the brain and the size of the skull.”
Dr. Miller showed us how the brain is supposed to fit into the skull. The green part on the bottom of the brain model is the cerebellum, and it fits snuggly into the skull.
But if the skull is too small for the cerebellum, the brain begins to come out the base of the skull. It creates a tight area because that’s where your spinal cord is also supposed to fit.
Dr. Miller adds, “The brain goes under pressure because the fluid can’t flow and balance out the pressures.”
There is one thing Chiari patients can do to improve symptoms like Taylor’s intense, pressure headaches: surgery.
Dr. Miller explains, “They go into the back of the skull, and they actually cut out a part of the back of the skull and form an opening. They widen the opening and then they cover it up with a piece of titanium. It gives it space and that takes away the symptoms.”
But Taylor is a little wary.
She shares, “There’s a 50/50 chance of getting symptom relief. It can also make things worse.”
Dr. Miller adds, “If the symptoms didn’t correlate and it’s something else giving you the headaches, then it may not be successful, but usually the decompression helps the problem considerably.”
But right now, there is no cure.
Taylor says, “It’s just been one heck of a journey.”
And unfortunately, the journey continues for Taylor. She says she wants to get the surgery in order to have a chance at a more normal life, where she can work, and play with her children. But she says she’s been fighting with her insurance for months to help cover it.
Her goal is to simply raise awareness. She hopes others will be able to understand their symptoms now and get an MRI earlier on.