Not even brain surgery could keep Kent Wilson from planning western Kentucky's first walk to raise awareness and funds for research to combat chiari malformation.
It's just too important for people like him who are suffering from the malformation of the brain stem and spinal cord to get answers, he said.
So even when planning his June 22 neurosurgery in northern Kentucky, Wilson was thinking ahead to the walk Sept. 21 at Kess Creek Park in Mayfield.
"I said that will give me something to shoot for as I'm healing," he said.
Chiari malformation is a condition in which the bony space enclosing the lower part of the brain is smaller than normal. This causes crowding that shoves brain tissue through the skull and down into the spinal canal, preventing the free flow of cerebrospinal fluid around the brain and spinal cord. It can cause intense headaches, ringing ears, dizziness, fatigue, trouble speaking, blurred or doubled vision, irregular heartbeat and blackout spells, among other symptoms.
Like most people with the condition, Wilson, 45, of Water Valley was misdiagnosed for years. He suffered from crippling headaches and occasionally passed out. But in June of last year, the losses of consciousness suddenly began happening with intense frequency. After passing out at work in Murray and an ambulance ride to the hospital, he ended up with a 10-day hospital stay in which he lost consciousness 15 times.
Twice, he said, doctors had to resuscitate him. Unfortunately, brain decompression surgery did not end his symptoms entirely. It also left him with a new symptom: seizures. He continues to pass out three to five times a week and has daily severe headaches.
Wilson doesn't know what led to his chiari, although anecdotal evidence suggests some children of Vietnam veterans exposed to Agent Orange are among those affected. Wilson's father was a chemical specialist when he served in Vietnam.
"It's still considered a rare condition, but thanks to MRI, it's being diagnosed more often," Wilson said.
According to the Conquer Chiari website, the number of people with chiari malformation is estimated as roughly 300,000 people in the United States, although people with milder cases may not have symptoms.
Conquer Chiari is the main advocacy organization from those who find themselves suddenly facing a chiari malformation diagnosis and trying to decide whether to have a risky -- sometimes fatal --neurosurgery to try to reduce symptoms. Saturday's walk is part of a series of walks across the country, the Conquer Chiari Walk Across America, held on the third and fourth Saturdays in September. Proceeds fund chiari research, education and awareness programs.
Although Kentucky has had previous chiari walks, those have been in Louisville or Lexington, Wilson said.
"I found out they hadn't had one in Kentucky in six years, and this is the first one they've ever had on this side of Kentucky," he said.
He has high hopes for it. Already, sponsors have donated $2,100 and 49 people have pre-registered. Walkers may also register at 3 p.m. the day of the walk, with the walk starting at 4 p.m. The walk distance is flexiable and at participants' own pace. A $40 donation covers T-shirt costs and helps raise more money for Conquer Chiari.
But even for those not walking, Wilson said there will be plenty of other opportunities to come together, support those with the diagnosis and raise funds. Hot dogs and lemonade will be for sale at the park. Other food and merchandise vendors are setting up, and a silent auction will be held. A children's area will feature super heroes, and live music will be provided by Jay Black and Anna & Jon. Brian Freed (formerly Jumpin' Jack of Froggy 103.7 radio station) will emcee the event.
For Wilson, the walk is also a chance to focus on something he can do and not the things he no longer can, like work, drive or walk for long distances without a walker.
"I can do this," Wilson said, "and I've become an advocate for other people."
• For more information on the Mayfield walk or to donate items for the silent auction, contact Wilson at email@example.com or visit the Conquer Chiari - Kentucky Facebook page. To pre-register or for more information about chiari malformation in general, visit www.conquerchiari.org.