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Pasco woman copes with rare brain defect

Lisa Abrahams’ symptoms of a neurological disorder were triggered nearly 2 1/2  years ago by the delivery of her daughter, Katelyn. It turned out to be Chiari malformation, in which part of the brain descends and crowds the spinal cord.

BRENDAN FITTERER | Times

Lisa Abrahams’ symptoms of a neurological disorder were triggered nearly 2 1/2  years ago by the delivery of her daughter, Katelyn. It turned out to be Chiari malformation, in which part of the brain descends and crowds the spinal cord.

PORT RICHEY — First came the blurred vision. Then the vertigo, the headaches, the racing heart.

"I started thinking," said Lisa Abrahams, "maybe something was wrong."

It took 1 1/2 years to find out just what that was.

Abrahams, now 31, was diagnosed last June with "Chiari malformation," a neurological disorder in which the bottom part of the brain descends out of the skull and crowds the spinal cord.

This defect puts pressure on the brain and the spine, resulting in symptoms that include dizziness, extreme fatigue and neck pain. Abrahams said her mind sometimes skipped through events; for instance, she would see someone start to smile but then miss the actual smile.

"It's like, 'What happened?' " she said. "I was normal before."

According to a national support group, it appears most people with the defect are born with it. About 300,000 people in the United States are thought to suffer from Chiari malformation, said the group, C&S Patient Education Foundation.

Symptoms, however, tend to develop later in life. Abrahams said doctors believe her symptoms were triggered nearly 2 1/2 years ago by the delivery of her daughter, Katelyn.

Dealing with the symptoms has been a struggle. She can't run around after Katelyn without feeling dizzy. She never knows when suddenly she'll feel off balance.

"I'd get up to walk," she said, "and feel like I was on a boat."

The vagueness of the symptoms has meant many of those who suffer from the defect see doctor after doctor and get test after test before finally receiving a diagnosis. Patients often go five years or more without a diagnosis, the support group says.

Abrahams, who used to work in real estate and is now a stay-at-home mom, said doctors didn't spot the defect in her first MRI.

"The worst thing for people is that doctors don't know enough about it," she said.

A treatment regimen is not clear-cut, either. In August, Abrahams underwent an operation in which doctors removed part of the skull and spine to make more room for her brain.

The operation eased some of the symptoms, though Abrahams still gets dizzy, still feels her face go numb. She said there isn't a lot of direction from doctors about how to live with the symptoms, either.

Abrahams is hoping to at least get people talking about it.

She got Gov. Charlie Crist to declare June "Arnold-Chiari Malformation Awareness Month." (The defect is named for Austrian pathologist Hans Chiari, who first described the malformation in the 1890s, and his colleague Julius Arnold, who added to the definition.)

And she is trying to find other Tampa Bay area residents who suffer from the condition to start a support group, which she believes would be the first in the area.

She knows firsthand that the loneliness of suffering from a little-understood disorder can be the hardest part.

"You feel so isolated," she said. "Nobody understands what you're going through, or even heard of it."

Jodie Tillman can be reached at jtillman@sptimes.com or (727) 869-6247.

>>FINGER ON THE PULSE

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>>FAST FACTS

Contact her

Want to get in touch with Lisa Abrahams about a Chiari malformation support group? E-mail her at chiarigroup@yahoo.com.

Pasco woman copes with rare brain defect 05/19/08 [Last modified: Sunday, May 25, 2008 9:45am]
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