Now woman’s race is against rare medical condition
By STEVE PENN
The Kansas City Star
She once was a swimsuit model who enjoyed jogging and working out almost every day.
These days, she wears a neck brace, has trouble speaking on occasion and spends some mornings lying in bed in a fetal position to take the pain away.
As she prepares to undergo major spinal surgery next week, Deann Appier-Haug wants people to know exactly what it’s like living with a rare medical condition known as Chiari malformation.
Appier-Haug, once the wife of former Kansas City Royals pitcher Kevin Appier, now lives in Parkville with her husband, businessman Chad Haug.
On Wednesday, she flew to New York, where she will have surgery Monday at the Chiari Institute of the North Shore-Long Island Jewish Health System.
Chiari malformation is a rare condition that causes the bottom part of the brain, the cerebellum, to protrude from the skull and into the spinal canal.
The condition usually is present at birth, but, as in Appier-Haug’s case, symptoms may not show up until adulthood.
Appier-Haug’s symptoms surfaced about two years ago, when she began suffering excruciating pain in her lower back. She had been an avid jogger and active athletically. One day she awoke and couldn’t move her neck.
“I couldn’t get out of bed,” Appier-Haug said. “I couldn’t sit in a chair. I couldn’t do anything. The pain became extreme.”
The condition is easily misdiagnosed. On May 19, after a visit to the Chiari Institute, she finally received a definitive diagnosis.
“Of course, I miss the extreme activities,” she said. “I want to jump out of an airplane. I miss scuba diving. I want to jump off the high-dive. I want to swim and go hunting. I want to do the things I used to do.”
She can’t. Instead, she feels heaviness throughout her shoulders each day. She has a stabbing pain between her shoulder blades and weakness in her arms and legs.
According to the Conquer Chiari Web site, the abnormality affects more than 300,000 people in the United States.
I spoke to her physician, Paolo Bolognese, the director of the Chiari Institute, who said Appier-Haug has a partial case of Chiari known as occult tethered cord syndrome. During the operation next week, he plans to focus on her vertebrae to remove a rubber-band like cord. He hopes that, by cutting that cord, the tension on her spine will be reduced and will lead to a reduction in her pain.
Appier-Haug has allowed doctors to film the procedure. She wants to be the face of Chiari.
Tears formed in her eyes as she recalled the effect the malady has had on those around her.
“This affects everybody: friends, family and associates,” she said. “It can ruin lives and it does. But this isn’t about me anymore. This is about all the other people who aren’t as fortunate as I am.
“If I can just get this information out and help one, two or three, maybe thousands, then it’s worth it.”
I wish her well on her surgery and plan to follow her recovery. It will be easy to know when she’s made it completely back. She will be resuming her regular jog of a dozen miles of so each day through Parkville.
To reach Steve Penn, call 816-234-4417 or send e-mail to spenn@kcstar.com.
Join the discussion
Share your observations and experiences about news. Lively, open debate is the goal, but please refrain from personal attacks or comments that are racist, vulgar or otherwise inappropriate. If you see an inappropriate comment, please click the "Report as violation" link to notify a KansasCity.com editor. Thanks for your feedback.