A Canadian and United States research study, which includes several Canadian medical researchers and patients, is offering a glimmer of hope to potentially thousands of people diagnosed with Dementia.
Normal Pressure Hydrocephalus (NPH) Normal is a brain disorder in which excess cerebrospinal fluid accumulates in the brain’s ventricle, causing thinking and reasoning problems, difficulty walking and loss of bladder control.
NPH presents with many of the symptoms of Dementia, but is a treatable condition. NPH – if caught early, can be reversed.
Dr. Mark Hamilton, neurosurgeon at the University of Calgary, Director of the Adult Hydrocephalus Program and Chair, Adult Hydrocephalus Clinical Research Network was recently featured (April 19,2017) by CTV’s Medical Specialist and Reporter, Avis Favaro.
“Probably less than 5% of people who have NPH are getting treatment for it.” shared Dr. Mark Hamilton, who has seen significant transformations in people who were previously misdiagnosed with Dementia.
The Adult Hydrocephalus Clinical Research Network (AHCRN) is comprised of a group of neurosurgeons, neurologists, a neuropsychologist, philanthropists, business, and nonprofit experts who have joined forces to share data and to partner on investigations into improved treatment for the adult forms of hydrocephalus.
According to Alzheimer Society of Canada, there are 564,000 Canadians living with dementia today, and the cost to care for those living with Dementia is a staggering $10.4 billion annually. The number of Canadians who will be diagnosed with dementia is expected to grow to nearly one million in fifteen years. (www.alzheimer.ca)
NPH happens when spinal fluids build up in the skull and put pressure on the brain. Dr. Hamilton said that NPH diagnosis starts with a brain scan. He further stated that ‘normal-pressure hydrocephalus’ (NPH) affects an estimated 770,000 people in the U.S. and Canada, according to recent estimates, and most of those patients go undiagnosed.
Doctors have developed a surgical treatment that drains the problematic fluid from the skull. When performed early enough, the procedure can fully restore a patient’s memory. The problem, doctors say, is that NPH often isn’t correctly identified. In Canada alone, doctors estimate that around 15,000 patients may be misdiagnosed with a more serious condition, such as Alzheimer’s and Parkinson’s disease, that leaves them bedridden or in nursing homes.
“Patients aren’t as aware of it, and doctors aren’t as aware of it.” Dr. Hamilton stated in the CTV interview. “I would estimate that probably less than five per cent of the people who have it actually are getting treatment.”
‘Over 500 patients are currently enrolled in the Adult Hydrocephalus Clinical Research Network (AHCRN) core data project. Patients continue to be enrolled at five sites in the United States and Canada. Currently, patients can be enrolled at the University of British Columbia, the University of Calgary, the Cleveland Clinic, Johns Hopkins, and the University of Washington.’
Normal pressure hydrocephalus occurs when excess cerebrospinal fluid accumulates in the brain’s ventricles, which are hollow fluid-filled chambers. NPH is called “normal pressure” because despite the excess fluid, cerebrospinal fluid pressure as measured during a spinal tap is often normal. As brain ventricles enlarge with the excess cerebrospinal fluid, they can disrupt and damage nearby brain tissue, causing symptoms of NPH.
The name for this condition, ’normal pressure hydrocephalus,‘ originates from Dr. Salomon Hakim’s 1964 paper describing certain cases of hydrocephalus in which a triad (a group of three) of neurologic symptoms occurred in the presence of ’normal‘ CSF (Cerebrospinal fluid) pressure – gait disturbances, dementia, and impaired bladder control. These findings were observed before continuous pressure-recording techniques were available. The phrase ‘normal pressure’ is misleading as many patients experience fluctuations in CSF pressure that range from high to low and are variable within those parameters. However, normal pressure hydrocephalus (NPH) continues to be the common name for the condition.
NPH primarily affects people in their 60s and 70s. Scientists aren’t certain how many older adults have this disorder because common symptoms of NPH are also common in other brain disorders.
- Difficulty walking that’s sometimes compared to the way a person walks “on a boat,” with the body bent forward, legs held wide apart and feet moving as if they’re “glued to the deck.”
- Decline in thinking skills that includes overall slowing of thought processes, apathy, impaired planning and decision-making, reduced concentration and changes in personality and behavior.
- Loss of bladder control, which tends to appear somewhat later in the disease than difficulty walking and cognitive decline. (www.alz.org)
There is no single test to determine if someone has normal pressure hydrocephalus. And even though the three hallmark symptoms listed above are considered the “classic” signs of this disorder, not everyone with NPH has all of these symptoms.
Brain imaging to detect enlargement of the ventricles, often with magnetic resonance imaging (MRI), plays a key role in diagnosing NPH. Several brain disorders, including Alzheimer’s disease, can cause overall brain tissue shrinkage that makes the ventricles look larger than normal. In NPH, although the ventricles are enlarged, brain tissue may not appear shrunken.
Because the symptoms of NPH may overlap with those of Alzheimer’s and other dementias, experts recommend that a person with suspected NPH undergo examination by a neurologist with extensive experience evaluating brain disorders that affect movement, thinking skills and physical functions.
If symptoms and an MRI strongly suggest NPH, a large-volume spinal tap may be used to identify those who may benefit from a shunt. In this procedure, doctors remove a larger-than-usual amount of spinal fluid, and then observe the person for 30 to 60 minutes to note any improvements in walking or thinking and reasoning. Most people originally suspected of having NPH do not improve following a CSF removal test.
NPH, the Spina Bifida and Hydrocephalus Association of Canada has four recommended steps if you observe potential symptoms in a loved one or yourself : record any symptoms, make an appointment with your doctor, ask for a referral for a CT/MRI scan and, once the results are in, request an appointment with a neurosurgeon for more information. www.ahcrn.org)