Thousands of Canadians who have been diagnosed with Parkinson’s disease and dementia may actually have a rare “impostor” syndrome that can be reversed with surgery, and a new clinic in Toronto is hoping to identify and treat those patients.
The condition is called normal pressure hydrocephalus, or NPH, and it comes with symptoms deceptively similar to dementia and Parkinson’s: memory impairment, a shuffling gait, difficulty standing and walking.
In some cases, patients with NPH are misdiagnosed and never receive the treatment they need – a devastating and costly oversight for the healthcare system, according to Dr. Alfonso Fasano, staff neurologist with the Movement Disorders Clinic at Toronto Western Hospital.
“They are often in nursing homes or they are a burden for family and caregivers. And with the proper diagnosis and treatment, these people have a completely different path in their life,” Dr. Fasano told CTV News.
Some estimates have suggested that around 15,000 patients in Canada with NPH may be misdiagnosed with more serious conditions.
John Searle was one of those patients. Years ago, the Ontario man developed a number of troubling symptoms, including an inability to stay upright while standing, a shuffling walk, incontinence, and a shoddy short-term memory.
“I listened to him repeatedly say, ‘I don’t know how much more of this I can take,’ and it broke my heart,” recalled his wife, Barbara Gaal.
When Searle went to the doctor, he was told he had Parkinsonism, a disease marked by symptoms of Parkinson's Disease and additional unrelated symptoms, and signs of early dementia. The diagnosis left him feeling defeated.
“I kind of wondered where I was going to go in life, or if this was it,” he said.
But six years after Searle’s life-altering diagnosis, doctors realized that they were wrong. He actually had a buildup of spinal fluid in his brain characteristic of NPH. A shunt was surgically inserted into his brain to drain the fluid.
And the results were shocking. Searle saw a significant improvement in his physical and cognitive abilities. He described the feeling as if he was “a phoenix rising out of the ashes.”
“Life is starting to look a little brighter,” he said.
The shunt treatment has an 87 per cent success rate in NPH patients, according to a recent study, and almost all patients saw improvement after a second treatment.
Symptoms of NPH typically appear in patients 60 or older. Physical symptoms typically appear first and are sometimes followed by cognitive symptoms, such as forgetfulness and lack of concentration, as the condition progresses. When untreated, patients with NPH can suffer from seizures, and the buildup of spinal fluid can lead to brain damage.
To combat the misdiagnoses, Toronto Western Hospital has set up a new clinic specializing in treating and studying NPH. The clinic is one of just a handful in the country specializing in NPH, and Dr. Fasano says it is receiving five or six new patient referrals each week.
“The demand out there is huge,” he said. “We are receiving tons of requests from really every part of Ontario.”
Research is also a large part of the clinic’s mission. NPH, first discovered in 1965, is considered a relatively new condition, and researchers hope to better understand what factors may lead to the syndrome. Toronto Western Hospital’s team comprises neurologists, neuroscientists, neurosurgeons and neuroradiologists, who are all working together in hopes of learning more about the deceptive syndrome.
For patients like Searle, the clinic has provided a drastically different outlook on life.
“It allowed him to regain his independence and become his person again is just like, beyond words important,” said Gaal.
