Sharon’s Story published
TRINITY — With her first luxury cruise fast approaching, Sharon Chadwell couldn’t have been more excited. She and her family were headed to the Bahamas for a three-day cruise.
The whirlwind trip was certainly a memorable vacation, but not of the weather-is-great, wish-you-were-here variety, and Chadwell brought home the worst possible souvenir — a rare, cruise-induced, neurological disorder that left her feeling perpetually woozy and fatigued, and nearly ruined her life.
“When I got off the cruise, I felt like I never got off the cruise,” the 50-year-old Trinity woman recalls. “I felt movement when I shouldn’t have been feeling movement, kind of like that sensation you feel after you’ve been riding a lot of rides at an amusement park, but it never went away. I told my doctor it was like being a buoy on the water — the up and down and back and forth and side to side, everything all at once.”
A neurologist diagnosed Chadwell with mal de debarquement syndrome, or MdDS. The disorder, which is typically triggered by a cruise, an aircraft flight or some other episode of sustained motion, causes not only the persistent sensation of motion — the most predominant symptom — but also such symptoms as fatigue, headaches, cognitive impairment and an inability to concentrate.
Chadwell had all of those symptoms. For four years, she worked with different doctors — including one specialist as far away as New York — to find some kind of treatment for the increasingly debilitating disorder that would allow her to get her life back.
Ultimately, she would find her relief at a clinic here in North Carolina, with a medical tool that looks more appropriate for a young, fit astronaut in training than a 50-year-old grandmother in distress.
Chadwell’s MdDS journey began in January 2013, when she, her husband Phillip and their then-13-year-old twins Jared and Rachel embarked on their cruise from a port in Florida.
Although she’d never sailed on the ocean before, she’d spent plenty of time fishing on her husband’s bass boat — and never had a problem — so seasickness was not a concern for her.
“We had really rough seas the first night, and the rest of my family got sick with normal seasickness — nausea and vomiting — but I didn’t have any of that,” Chadwell says.
She does believe, however, that that’s when her MdDS kicked in. She remembers sitting at one meal, in particular, when the boat was moored, but she felt as if they were in the midst of a storm on the high seas.
“It was a pretty intense sensation,” Chadwell says, “but nobody else felt it.”
After the cruise, her symptoms got worse — the motion sensation, the fatigue, a nonstop headache, brain fog, and an inability to look at a computer screen for any length of time. By the end of March, she had quit her job at the Archdale-Trinity Chamber of Commerce because she could no longer function in a work environment. She also struggled to perform simple tasks such as running to the grocery store, preferring instead to stay in bed.
Her primary-care doctor said her symptoms would probably pass, but when they didn’t, he referred her to a neurologist. He diagnosed the MdDS and suggested a number of medications Chadwell could try.
“I went through a whole hoard of them,” she says. “Most of them just made me more sleepy — they didn’t seem to help with the symptoms at all.”
Chadwell went through a battery of other medical professionals, from neurologists to vestibular specialists — doctors whose area of expertise is balance — to balance rehabilitation therapists, but none could help her. As she continued getting worse and hope began to fade, Chadwell added depression to her list of symptoms.
In late 2014, nearly two years after the onset of her MdDS, she saw a vestibular specialist in New York City who had had moderate success in helping patients with the disorder. After a week of treatments focusing on an inner-ear mechanism believed by the doctor to be the cause of MdDS, Chadwell improved significantly.
“I got about 80 percent of my life back,” she says. “I wasn’t cured, but I could do a lot of things I couldn’t do before. I still had the movement sensation sometimes and the headaches, but I could suffer through that to do things my family needed me to do.”
That lasted until February of this year, when the disorder became aggressive again.
“Sometimes your MdDS decides you’re going to be sicker for a while,” Chadwell says. “It’s a very vicious condition and will come back on you with a vengeance. That’s what happened to me.”
The breakthrough came in May, when Phillip Chadwell read about a woman with MdDS who had been successfully treated with an odd, futuristic-looking device called a GyroStim. The clinic was in Asheville, just a couple of hours from the Triad, so he encouraged his wife to see if she could get an appointment there.
“When you’ve had MdDS as long as I did,” she says, “you think anything is worth a try.”
The last week of June, Chadwell spent a week undergoing GyroStim treatment at the Asheville Balance & Vestibular Center, which has one of only a dozen GyroStims in the country.
The GyroStim, which was originally used by NASA and the U.S. Air Force, is a large, automated rotational chair that spins in all directions, including upside-down. It can spin as slowly as a single revolution per minute or as fast as 30 revolutions per minute. The GyroStim is used for exercise balance training — for athletes, for example — but has also been used for individuals with balance disorders and dizziness, as well as concussions, attention-deficit disorder and post-traumatic stress disorder.
Chadwell became only the second MdDS patient to be treated with the GyroStim.
“I had been working with MdDS patients for the past 10 years, attempting vestibular rehabilitation, but with only fair success at best,” says Dr. Kim Fox, Chadwell’s doctor in Asheville. “We were primarily doing exercises that we do with other vestibular disorders.”
Earlier this year, an MdDS patient asked Fox to treat her with the GyroStim, and the doctor agreed to give it a try.
“She had had the disorder for 10 years,” Fox says, “and she is now symptom-free.”
That’s the woman Phillip Chadwell had read about, and now other MdDS patients are reading about his wife.
“My very first day of treatment, they lowered my symptoms to almost nothing,” Chadwell says. “They weren’t quite gone, but I remember thinking, ‘There’s hope for this.’”
By the end of the fourth day, the moving sensation was completely gone. The headaches and nausea persisted longer, but they eventually subsided, too.
According to Fox, the GyroStim helps retrain the brain’s systems for managing balance and stability.
“You’re stimulating neural pathways in the brain,” she says. “The brain wants to heal when it’s been damaged — it just needs to be given the right opportunity, and that’s what the GyroStim does. What happens in MdDS, how the neural pathways are being utilized gets shifted, and the brain adapts to the abnormal response. It adapts to being on the boat just fine, but once you get off the boat, it doesn’t adapt.”
The GyroStim, then, helps return that abnormal shift back to normal.
“We don’t have this big body of scientific evidence yet — we need more research — but we have these good clinical trials showing patients seeing improvement,” Fox says.
Following Chadwell’s success, Fox is currently treating two more MdDS patients and has at least another dozen scheduled for treatment.
“It’s amazing,” Chadwell says. “I’ve gotten my life back.”
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