Tyffanie’s Story (Chiari Malformation)

I am actually telling my daughter’s story. Even though I myself don’t have Chiari, I fight right along with her.

She started getting really bad headaches about 6 years ago, not wanting to go to school, etc. I thought it was just because she didn’t want to get up. Then she started staying in bed on weekends and not having fun, so I took her to her doctor, and they ordered an MRI and found she had Chiari, which is a neurological condition where basically the bottom of your brain (cerebral tonsils) hang out of the skull and press on the spinal cord.

She underwent a brain surgery called a decompression, and everything seemed fine until she got pregnant at age 15. After she had her baby, her symptoms came back—headaches, back pain, vision problems, and numbness in the hands, legs, and feet.

I drove her from Texas to New York to see a specialist, and he recommended removal of her cerebral tonsils. But I had to pay out of pocket for that visit, and he doesn’t accept Medicaid. We can’t afford that surgery, and only a handful of doctors will do it.

Most of the time now, she seems fine, but there are days when she can’t leave her bed because the pain is so bad. I fight so hard to bring more awareness to this condition because even some doctors have no clue what to do about it.

Tyffanie
Texas
Submitted 11/03/2017

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.