It started simply enough for Anne Barnes — first in the operating rooms of the Grace Maternity Hospital (now the IWK) where she worked as a nurse until the late 1980s. Her colleagues would request things of her in the delicate moments of delivery and, to her bewilderment, she couldn’t hear them clearly. Shortly thereafter, her symptoms worsened.
Anne would wake up to find her bedroom spinning, and on the mornings when she dared step out of bed, she promptly tumbled to the floor. These bouts of dizziness followed her to work, and when she tried to read, the words would slosh around on the page. At first she blamed these anomalies on low blood sugar, then an inner ear infection, but in reality her situation was much more serious.
She was later diagnosed with Ménière’s Disease, a disorder which affects those parts of the inner ear involved in hearing and balance, known broadly as the vestibular system. In time it robbed Anne of her career, her independence, and eventually, her ability to move without the aid of a walker or wheelchair. She was 37 years old.
“It takes over your whole life,” says Anne, now 62 and living in Dartmouth.
Vestibular dysfunction can take many forms, Ménière’s Disease being one of them. Apart from affecting one’s balance and hearing, it can lead to difficulty concentrating, tinnitus, nausea, constant fatigue and, for those who lose their freedom of movement, depression.
“More than a third of adults aged 40 and over have some sort of vestibular dysfunction,” says audiologist Janine Verge with the Nova Scotia Hearing and Speech Centres (NSHSC). With clinics in over 24 communities across the province, including the QEII, the NSHSC is a provincial program of the Nova Scotia Department of Health and Wellness.
“Vestibular function is often difficult to diagnose because there are many different disorders that can cause dizziness, and some patients have more than one cause, which may or may not include the vestibular system,” says Janine. “Some patients need multiple tests to determine the origin. A firm diagnosis can take time and the wait can be very terrifying.”
Anne can attest to this anxious wait, but also to the inadequate treatments available when she first began her fight against Ménière’s. At the time, the facilities and expertise simply didn’t exist in Atlantic Canada.
Despite medication and surgery to control her symptoms, she continued to have balance problems. While there is no cure for Anne’s condition, physiotherapy helped improve her symptoms. In addition, she began working with a fitness trainer who challenged her with exercises to help retrain her in the art of balance. These exercises helped her to use her vestibular system better, and to have her vestibular system work better with her vision and sense of touch. After four months of hard work, Anne could stand on her own and, after 18 months, her balance tested above average.
“I was able to ditch my walker,” says Anne. “I eventually got rid of my canes, sold the wheelchair, and then it just took off from there.”
As part of a team, the NSHSC works with specialists from other disciplines to help diagnose vestibular dysfunction.
“In the last 10 to 15 years, there’s been a real explosion in our ability to improve our services,” says Janine. “We’re very lucky to have the equipment we do, and leading specialists from ear/nose/throat (ENT), neurology, occupational therapy and physiotherapy.”
Twenty-seven years ago when Ménière’s Disease impacted her life, Anne had to visit specialists in Toronto for treatment and order information on her disease from Portland, Oregon. Now the NSHSC’s facility at the QEII is the largest balance centre in Atlantic Canada, powered by resources found in very few places across the country.
But there’s more to be done, in Janine’s opinion — like improving communication about best practice strategies across Canada. The goal is to work together in the spirit of continuous improvement.
“We are able to provide standard vestibular testing, along with new leading-edge assessments, to help with the diagnosis and management plan,” says Janine. “This might mean physiotherapy, medication, surgery, counseling or lifestyle changes.”
While Anne still experiences symptoms, repeat testing will help monitor her condition over time and detect any new vestibular issues. She always remains positive and grateful for progress made. “It’s like I got a second chance, doing all these things I thought I’d never do again.”