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Conquering Chiari: A mother and daughter who both have Chiari malformation team up to support others living with the condition. Mom Agnes Starr, 42, shares the details.

Hiscott, Rebecca

doi: 10.1097/01.NNN.0000475903.62330.9b
Departments: The Waiting Room

Readers Like Me: A mother and daughter walk to conquer Chiari malformation.

WEB EXTRA: To learn more about Agnes Starr and her daughter, listen to our podcast at http://bit.ly/NN-Starr.

I was in a car accident in 1999. After that I started experiencing extreme fatigue and pain. My symptoms persisted over the next four years and I eventually had an MRI, but three different doctors missed the Chiari malformation [a birth defect in which the brain tissue extends into the spinal canal, potentially blocking the flow of cerebrospinal fluid].

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When I was pregnant with my daughter Haley in 2007, my symptoms got even worse. I kept collapsing, and soon I couldn't even walk. My then-husband had to carry me into the hospital. The doctors decided to wait until after I gave birth to do another MRI.

When I returned to have the MRI nine months later, I'd begun to feel like my insides were vibrating. I had an icy-hot burning feeling throughout my entire body. After my diagnosis, several doctors told me that my worsening symptoms were due to the epidural I received during Haley's delivery. I was also told that although Chiari is believed to be congenital, symptoms can be triggered by a traumatic event like a car accident.

We found out in May that Haley, who's now 7, has the condition too. The school nurse called me and said Haley took a tumble in gym and had a headache. I knew right away. I sent her for an MRI, and sure enough, she had Chiari. She also has syringomyelia [which causes a fluid-filled pocket, called a syrinx, to develop in the spine] and sleep apnea. [Both conditions are common in people with Chiari malformations.]

Five years ago, I started the Conquer Chiari Walk (http://bit.ly/Chiari-Buffalo) to help raise money for research and bring people with the condition together. Every year in mid-September, Niagara Falls lights up purple for the walk. I even got Buffalo Mayor Byron Brown, State Senator Michael Ranzenhofer, and Governor Andrew Cuomo to sign proclamations recognizing September as Chiari Awareness Month. [To find the walk closest to you, visit http://conquerchiari.org.]” —As told to Rebecca Hiscott

© 2015 American Academy of Neurology