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Langley woman hit with rare brain disease

LANGLEY — Rushing through life, Kim Tiller didn’t think much of a little tingle here or a pinch there.

There were community activities to plan, and she had a business to run.

Tiller, the owner of Whidbey Island Soap Company in Langley, didn’t know that her brain had begun to self-destruct and she was having small strokes.

She also didn’t know that this was caused by a rare disease called

Moyamoya.

“The disease is thought to be extremely rare, 1 in 2 million, but there are four women in our area who have it; me, a woman on Camano Island, one in Stanwood and another in Bellevue,” she said.

The symptoms were subtle.

“My family noticed my personality was changing. I was easily stressed and got angry fast,” Tiller said.

“I wasn’t me.”

Tiller couldn’t organize things and was unable to gather her thoughts when she tried to plan for the future.

David Tiller, her son and business partner, was concerned.

“My son didn’t understand it at the time. He was just thinking I was lazy,” she said.

Eventually, she had to stop volunteering on Langley’s economic development committee and she also quit her involvement with Langley’s Christmas celebration.

As her symptoms worsened, she made several trips to her doctor and she ended up in the emergency room of Whidbey General Hospital.

“One day, while I was driving, my lip and fingers went numb. Turned out I had a couple of small strokes, maybe three,” Tiller recalled.

“You can’t tell you’ve had them but they do damage your brain. The brain is a marvelous instrument in the way it reprograms itself to work around the damaged areas,” she said.

While the strokes were finally diagnosed, the cause was still a mystery.

“At Harborview (Medical Center in Seattle), they always say ‘Time is brain,’ but doctors took their time with the diagnosis,” she said.

She continued her odyssey with different doctors on the mainland. Tiller soon learned that in patients with Moyamoya disease, collateral vessels form to circumvent the clogged arteries.

“This tangle of blood vessels when seen on an angiogram looks like a puff of smoke,” she said. “The Japanese word for puff of smoke is moyamoya, thus the name of the disease.”

Eventually, her symptoms were matched with the diagnosis of

Moyamoya disease, but the doctors had no good news about treatment.

“One doctor said, ‘Get yourself to an ER as soon as possible if you have a stroke.’ That’s it,” she said.

Moyamoya is usually found in younger patients. Tiller didn’t fit the profile and doctors didn’t think treatment would work.

There’s no cure for the disease, but there are effective surgical treatments, as Tiller found out through research.

“Unfortunately, too many doctors have little or no experience with the disease and adopt a wait-and-see approach. They prescribe aspirin or a blood thinner, then wait and see if the patient has another stroke,” Tiller said.

Not ready to sit and wait to die, Tiller spent several days in a Seattle medical library researching the disease.

“What I found there was a doctor at Swedish Medical Center.

I got an appointment three weeks later. The idea again that time was important was not there,” she said.

She also learned about

Dr. Gary Steinberg at the Stanford University Medical Center in California, a leader among the handful of doctors who specialize in the disease.

Tiller sent her medical records overnight to Steinberg, and the doctor, unlike others before, stressed that she needed immediate help.

“Dr. Steinberg called me back immediately and told me I needed the surgery and scheduled an appointment within days,” she said.

That was in late October.

Steinberg performed two surgeries on both sides of Tiller’s brain. Each of the surgeries lasted nine hours; they were performed within a week of each other.

Her parents accompanied her, while her son stayed in Langley to run the business.

“It was hard for him not being there, but we had to stay open to stay in business,” she explained.

Tiller said the experience was scary and expensive, but it worked.

“Lists. Plans. Future. It’s coming back,” she said.

Tiller, who is recovering from her surgeries, has to go back to California for more treatment in May.

“It may be a lifetime of trips to California,” she said. “But I’m here today and I’m alive.”

Tiller now wants to raise awareness and help other

Moyamoya patients.

“You want to give back. I really feel like I a dodged a bullet,” she said.

Tiller recalled how she felt a bit embarrassed after her surgery about the big scars on both sides of her head. Now, she is thinking of others who undergo treatment and is trying to help out.

“I made up cute caps for women and send them down there (to Stanford) to cover up the scars,” she said.

Tiller is also organizing a gathering of Moyamoya survivors in Langley this summer at the Saratoga Inn. The event is planned for Aug. 9 and 10.

Michaela Marx Wheatley can be reached at 221-5300 or mmarxwheatley@southwhidbey

record.com.

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