Fighting back against a little-known neurological disorder

Erin McGrath felt like she was being stabbed in the head with an ice pick - all day, every day.

The pain left the Arlington Heights woman bedridden, forcing her to withdraw from her doctoral studies in clinical psychology. Her baffling symptoms also included memory loss and cognitive deficits.

For the three months, McGrath sought an answer. She researched and visited specialists around the U.S., who came up with various diagnoses: multiple sclerosis, aneurysms, epilepsy, fibromyalgia, nonresponsive migraine headaches, chronic fatigue syndrome and even stress.

"One doctor said he didn't know what was wrong, but that she should face the fact she'd end up in a wheelchair," said McGrath's fiance, Marshall Sheffer. "She came home from doctors' appointments crying and inconsolable."

Stubborn and determined, McGrath demanded all her medical records. She pored over thousands of pages and saw the phrase three times: Chiari malformation.

In July 2005, specialists in New York agreed: McGrath has the congenital condition in which part of the brain - the cerebellum - protrudes downward into the spinal canal.

Additional symptoms include dizziness, weakness, numbness, vision problems and loss of balance.

Chiari malformations can range from mild to severe. Symptoms can begin at birth, or not until adolescence or adulthood. Some people don't even know they have the disorder until it's discovered by accident, while others, like McGrath, experience debilitating pain and other symptoms.

And most people have never heard of it.

McGrath, now 27, is leading a campaign to raise awareness, organizing the Illinois leg of the Conquer Chiari Walk Across America Sept. 20 at Deer Grove East Forest Preserve in Palatine. All proceeds go toward research grants to improve understanding, diagnosis and treatment.

"Neurosurgeons with extensive experience in Chiari are few and far between," said McGrath, a 1998 graduate of Hersey High School in Arlington Heights. "Of course we want to raise money for research, but for me, personally, I just want people to take notice."

Dr. John Oro, director of the Chiari Care Center in Aurora, Colo., estimates roughly 300,000 Americans have Chiari malformations.

"Chiari is either underdiagnosed or ignored," said Oro, who writes the blog Chiari Times. "Very little of the (medical) community is educated."

Experts will gather at a conference in November, in part to create a report for the National Institutes of Health. Oro says Chiari is "terribly underfunded compared to other, less common disorders."

Surgery is one treatment option. But McGrath felt Chicago-area doctors had only minimal experience with the type of brain surgery she needed - and her insurance wouldn't pay for the out-of-network, $150,000 procedure. As a result, doctors treated her with heavy narcotics that dulled her pain, but also kept her from functioning.

Another treatment is a procedure that stretches the neck to relieve pressure on the brain. Doctors inserted poles into McGrath's head, setting up a pulley system to elongate the neck. The procedure left her feeling alert and thinking more clearly. The success, however, was always short-lived.

Then a year ago, doctors found a new anti-seizure non-narcotic that controlled the pain enough for her to re-enroll in school.

It's a Band-Aid, not a cure. There's still some pain and surgery may still be in her future, but McGrath says she's one of the lucky ones. Her symptoms now resemble attention deficit hyperactivity disorder. She loses her train of thought, has trouble finding words and often has to read a page twice.

"It's called the Chiari fog, like your brain is cloudy," she said.

A "lifelong learner," McGrath found getting back to school kept her motivated to push on. To help keep things in perspective, she and Sheffer trained their beagle terrier as a therapy dog. They'd make weekly visits to a memory care facility in Wheeling for people with Alzheimer's.

She's indebted to her parents, who McGrath says have exhausted their retirement fund to pay for all the travel and treatments.

She's unable to pay them back, but the walk is a way of contributing. She also plans on writing her dissertation on the cognitive effects of Chiari. Already, McGrath's experience helped to quickly diagnose a family friend.

The Sept. 20 walk is the first time the fundraiser will be held in Illinois. Only 15 states at 20 sites will be represented during simultaneous walks.

McGrath hopes next year's walk is bigger. "It's been quite a journey, but I have to believe this happened for a reason," she said. "I'm considered lucky and have the opportunity to advocate for people who are worse off."