More than just a headache; Kitsap resident wants to spread the word on Chiari Malformation | Kitsap Week
By STEPHANIE FYFE
North Kitsap Herald Correspondent
August 31, 2011 · Updated 2:10 PM
In spring 2010, two weeks after having brain surgery, Port Orchard resident Heather Cottier volunteered to organize the “Conquer Chiari: Walk Across America” in Washington state to raise awareness of and research funds for Chiari Malformation, a neurological disorder.
Sept. 17 will be the fourth annual event nationwide and, thanks to Cottier, the second in Washington state.
“I was frustrated with not having the support I wanted after I had surgery,” Cottier said. “We didn't have any [walk] within our surrounding states or here so I said, ‘I'm gonna do it.’”
Chiari Malformation. Foreign words to many, but to 300,000 Americans — one out of a 1,000 people and their families — these words are life-changing. According to conquerchiari.org, Chiari Malformation (pronounced kee-AR-ee), is “A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and the spine, disrupting the normal flow of the cerebrospinal fluid.”
“Conquer Chiari: Walk Across America” is growing. In 2010, walks were held in 20 states but this year 32 states will hold one or more walks. The hope is one day this walk will take place in all 50 states.
Cottier not only organizes the walk in Washington state, but also lives with the disease.
“I was a healthy kid. Never really had any broken bones, never really any issues and then all of a sudden just started having some things happen to me when I was [in] my mid-to-late 20s and just really couldn’t put a name or really any answer to it,” she said.
Because of lack of education in the U.S. about Chiari Malformation, patients often spend years being misdiagnosed and wrongly medicated.
“[I was] tired all the time, just extreme pain, extreme neck pain, muscles in my shoulders, all that kind of stuff. I was pretty much nauseous all the time. I had migraines, but from the back of [my] head instead of the front and that's where [my doctor] was like, ‘That's not right.’
“He said, 'That’s not where migraines should be coming from.’ So they sent for an MRI.”
Magnetic Resonance Imaging, or MRI, is the only way for doctors to diagnose Chiari. Cottier was diagnosed more than six years ago.
“It shows where your brain is actually hanging down. Instead of a nice cupped picture of your brain, it's a ‘V.’ Your brain is V'd into your spinal column,” Cottier said. “[My doctor] had no idea what it was. He went on the Internet, looked it up and then had totally uneducated answers for me. He said, ‘Don't do anything,’ and sent me on my way. And I said, ‘Should I be concerned?’ and he's like, ‘Totally.’”
Thinking that after living for more than a year with these symptoms that the diagnosis would shed some light on her confusing situation, it really only began a lifetime of frustration.
“I went in for this sinus infection and came out with this horrible diagnosis and was really freaked out. And then my first time going to a neurosurgeon he told me to look it up on the Internet,” Cottier said.
As time passed, Cottier got even less from doctors.
Cottier was told “It's psychosomatic,” and “You're just imagining it,” and “Just deal with it.” But she knew how serious it was when her symptoms rapidly advanced.
“I started having vertigo and I would be out of work at least once a week,” she said.
Often patients with Chiari are put on anti-depressants because of the stress from feeling alone and misunderstood, as no one seems to know or believe what is happening to them because of lack of knowledge of the existence of this disease.
“There is a very big lack of support within the medical community. Just because we look like nothing’s wrong with us doesn't mean there isn’t. They tell you you're hypersensitive and basically it's all in your head. We're like, ‘No, really. It is. It is in my head!’”
About a year and a half ago, Cottier had brain decompression surgery, known as Posterior Fossa Decompression. It's common surgery for Chiari patients to make room and release pressure of the brain, spine and spinal fluid.
“I've got big ol’ stitch marks from the bottom to the top of my head,” Cottier said.
Despite going to one of the top doctors in the U.S. for her condition, her symptoms have remained and others have become worse. Cottier still gets numbness in her arms and face, has chronic fatigue and has frequent moments where she nearly passes out.
According to conquerchiari.org, “Precise data is not available, but up to 50 percent of people become symptom free after surgery; another 20-30 percent improve significantly, and about 20 percent do not improve or get worse.”
More than 4,000 people will walk on Sept. 17 at noon at 47 sites in 32 states, hoping to turn the tide.
Cottier continues to be supported by her husband, two sons, and mother, Connie Farbo, who has been her co-organizer for the past two years.
Last year, Cottier's walk at the Clear Creek Trail in Silverdale had more than 75 participants and raised more than $8,000.
This year her goal is to double the amount raised and the number of participants.
Registration for the Sept. 17 walk begins at 11 a.m. at the University of Washington plaza in front of the Suzzallo Library.
The walk will be a slow paced, half-mile to a mile long.
“It's not a huge walk, more of just a minimal kind of walk around the campus and then a visiting. Not all of us have a lot of energy to be able to do a big walk like some of these events that people go to. It’s just more fun and relaxed and social.”
After the walk, participants are welcome to play games for prizes, participate in a silent auction, enjoy face painting, receive goody bags and get a chance to meet others and learn about Chiari. This event is open to the public.
“That's the biggest thing. If somebody comes, they hear [about Chiari]and they tell one person and that person tells another ... It just keeps going and going. That’s all we can ask,” Cottier said. “Please spread the information. You'll be really surprised to find out you might know somebody who has it.”
For more information, visit www.conquerchiari.org or visit on Facebook at "Washington Conquer Chairi" (Chiari is misspelled on the Facebook page).