The Teen Years: Living Undiagnosed with Arnold Chiari Malformation

July 22, 2012

I am a teenager living with an undiagnosed genetic disorder. The lack of a diagnosis has not kept me from experiencing several chronic conditions including Arnold Chiari malformation, an aortic aneurysm, several skeletal issues(fused bones and scoliosis), GI issues, short stature, and hypothyroidism. In 2010, my health issues really began to take over my life.

In early January, I awoke to find myself experiencing a horrible pain in my back that lasted over eight months. It turns out that pain very well could have killed me. My aortic aneurysm was so big that it was putting pressure on my back. I found out later how truly lucky I was that it didn’t tear. I have had a total of five surgeries including an aortic root replacement and Chiari decompression surgeries.

Due to complications of my open heart surgery, I was given a pacemaker in September 2010. Two weeks after my implant surgery, I had to go back in to have the pacemaker repaired. Unfortunately, less than a year later I underwent my Chiari surgery to correct severe symptoms of the Arnold Chiari.

Since then, I have been symptom free – although, I still continue to live with the unknowns of living undiagnosed.

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