Walk planned for Lafayette woman living with severe brain condition

LAFAYETTE - For years, Ann Perkins was given a multitude of diagnoses and she tried many treatments, including some that may have ultimately made her condition worse.

After 10 years, Perkins, 37, was correctly diagnosed with chiari malformation, a serious neurological condition in which part of the brain descends out of the skull into the spinal area.

By speaking about her condition Perkins hopes to spare others some of what she's gone through. A walk at noon Saturday at Urbana City Park, 731 Children's Home Road is aimed at raising awareness about the condition and funding for research, Perkins said.

No cure exists for chiari and the only treatment is brain surgery; Perkins was scheduled to have her third different surgery this weekend.

Symptoms include extreme pain and migraines, memory loss, balance problems, numbness in the face and limbs, erratic blood pressure, sleep apnea, pressure in the head and skull and respiratory problems. Nearly all chiari patients live with at least five of the symptoms.

"It's like someone's twisting a knife into the back of my head and neck," Perkins said. "You just live with it."

Perkins said not being able to participate in family activities with her husband, daughter, 13, and son, 11, is the most difficult part of the condition and why she continues to seek surgical help to relieve her symptoms. She's had a titanium plate screwed into her skull to keep part of her brain in place, and this weekend she was scheduled to have shunt installed, all to give her more time.

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