Central Florida woman fights for better resources for Chiari patients

Walk & Roll For A Cure planned for Sept. 28

By Kirstin O’Connor - Reporter/Anchor

APOPKA, Fla. - A woman who spent decades of her life treating chronic pain with narcotics wants a better life for her two sons with the same condition.

Jeni Adair said she cannot remember a day of her life without headaches.

"I can feel my heartbeat pounding in my temples," Adair said.

She went to several doctors to try to find relief. Some thought it was an allergy or maybe tension could be to blame.

When she was 26 years old, the pain got so bad Adair said she had to be hospitalized several times during her second year of veterinary school.

It was after one of those trips to the emergency room she had a CT scan that revealed the problem.

Her diagnosis: Chiari malformation. Adair said the scans showed part of her skull near her spinal canal was open, pushing her cerebellum through the opening.

According to the Mayo Clinic, Chiari malformation is uncommon, but advanced imaging tests have led to more diagnoses. Symptoms can be treated, but surgery is often necessary for patients born with the condition.

"Within a week, I was seeing a neurosurgeon, a week after that I was in surgery," Adair said.

Complications after Adair's surgery caused a leak of cerebrospinal fluid that took five years and 17 surgeries to fix. Doctors prescribed heavy narcotics to manage her chronic pain.

"Without any pain medicine at all, I can't even imagine," Adair said. 

The surgeries caused Adair to take a medical leave of absence from veterinary school and declare bankruptcy.

"I had given up on my dream of ever being a veterinarian, I'd given up on my dream of ever getting married or being a mom as well," Adair said.

Until 2003, when she met her husband.

"When I got pregnant the first time, the research had shown that there's a 1 in 4 chance that you'll pass it on if you have it," Adair said.

Adair no longer has to rely on narcotics for her pain management, but is still seeking treatment for headaches in Tampa. 

Both of the couple's sons have since been diagnosed with Chiari malformation. Adair hopes to delay their surgeries for as long as possible until research leads to advanced procedures.

"So that people don't have to travel far to find a specialist who understands everything that goes along with Chiari," Adair said.

The American Syringomyelia & Chiari Alliance Project is inviting all of Central Florida to their Walk & Roll for a Cure on Saturday, Sept. 28, at the Northwest Recreation Complex in Apopka.

Click here fore more information.

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