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Woman Tackles Brain Disorder

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Cox News Service

Published: September 30, 2007

URBANA, Ohio - The obscure disorder on Carrie Marenberg's new Web site afflicts about 300,000 Americans. That makes it more prevalent than cervical cancer, the target of ubiquitous TV advertising.

'And so many people more than likely have Chiari malformation, but don't know it,' she said. Her own doctor only learned about Chiari from her MRI report last February.

Marenberg had to look it up on the Internet to find out it meant the bottom of her brain extended out of her skull, crowding the spinal cord and blocking the flow of spinal fluid to and from the brain.

After her intial shock, Marenberg made it her mission to help doctors and patients recognize Chiari.

Her Web site offers information about the disorder and enables people to discuss their often-debilitating symptoms and contact other sufferers at www.freewebs.com/carrieschiariconnection/.

'It's not only the general public that doesn't understand Chiari, but also the doctors,' said Marenberg, 36. Her goal is for doctors to know enough about it to reflexively order diagnostic MRIs when patients have symptoms.

Patients typically endure decades of misdiagnoses. Marenberg's headaches began as a toddler, but doctors ruled out migraines or sinus problems.

The symptoms worsened in the past four years, with dizzy spells, frequent fatigue and heart palpitations. She'd pass out, sometimes losing sight and hearing while conscious.

Her concentration evaporated in a 'Chiari fog,' leaving sentences unfinished or getting lost in familiar areas.

Her neck hurt constantly. It took four doctor visits for neck pain before the MRI needed to diagnose Chiari.

Marenberg could undergo surgery, removing skull and spinal bone to relieve pressure where her brain doesn't belong. But it's risky and doesn't always help, so she's trying drugs and procedures.

Even without much symptom relief, knowing what's wrong helps. She knows not to ride any more roller coasters. She has learned to avoid the worst of that upper-neck pain by yelling less loudly at her son's football game. And she no longer doubts her sanity.

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