Chiari Malformation: Amy’s Story

Chiari what??? 15 years ago I got that phone call from my doctor and I was so confused as to what he was saying. I couldn’t even pronounce it! Now it’s common lingo in my house, but for those of you that don’t know how to pronounce it, it’s key-r-e.

So what is chiari? Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

Chiari malformation type I develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The pediatric forms, Chiari malformation type II and type III, are present at birth (congenital).

I have chiari type I. Mine didn’t present until I was 30 years old. It was the scariest time of my life and I was certain I was going to die.

My symptoms started in the summer of ’05 and I went downhill very fast. I had numbness in my hands, legs and face. I couldn’t lift my children who were 4 and 2, let alone a gallon of milk. I would collapse because my legs would be so numb. In fact my husband and I had to teach our son to call 911 in case I passed out or collapsed while he was at work. I also remember my son holding my hair while I vomited in the toilet, the pain in my head was so severe. I spent lots of time in the bathroom. I was so sad for him. I should have been taking care of him, not him taking care of me. I had severe insomnia and slept less than 2 hours a night. I was on several intense drugs and would often be in a zombie state from them, but I needed them for pain.

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Chiari Malformation