NPH is the short form term for a three-word disease misdiagnosed all too frequently. I first learned about Normal Pressure Hydrocephalus from a colleague. She told me how her life had been impacted when her mother became ill and she took on the responsibilities of a full-time caretaker. All of the classic symptoms of NPH were present, but doctors were not picking up on them.
Unfortunately this is not uncommon because the disease is commonly confused with Parkinson’s, Alzheimer’s, and dementia. Patients can be put on a series of medications, which in fact have no connection to their condition; time is squandered, finances are drained, and the patient deteoriates. The answers were available, if only the right questions had been asked.
A current leader in the field of procedures for spine and brain disorders, Dr. Santiago Figuereo, a board certified neurological surgeon and founder of the Miami Neurological Institute, walked me through a primer on NPH. He gave me a basic overview of the disease, how it can be treated and explained it occurs with greater frequency in people over 60 years of age. Many of the people he's seen have had their symptoms incorrectly mistaken for Parkinson’s disease, Alzheimer’s disease, or dementia.
Alzheimer’s disease is the number one neurological disorder. Dr. Figuereo clarified that dementia is not a disease, it’s a symptom defining memory loss. The question to ask is, “Why does a patient have dementia?” Parkinson’s can lead to dementia; senile dementia happens in older people. Most importantly, not all memory loss issues are the same.
In illnesses categorized as neurodegenerative diseases, there is “a wasting of the brain.” Since memory loss is a symptom of NPH, the initial reaction of an attending physician is often, “It’s Alzheimer’s. I can’t help you.”
Part of the detective process can include ordering an MRI or CAT scan, but that does not hold the key. Physicians need to know the difference between the distinctive features of NPH and Alzheimer’s that make them look the same. A “clinical suspicion” must become a call to action to avoid going down the wrong path.
There are three red flags for NPH:
· Memory problems
· Bladder control, urinary frequency, incontinence
· Gait and balance issues
A recognition of these factors, not always simultaneously, is the clearest way to suspect the presence of NPH.
Dr. Figuereo explained that the skull cavity is filled with brains. Older brains shrink, and brain fluid fills up the extra space. When there is a buildup of cerebrospinal fluid (CSF) in the brain and the brain is unable to properly drain the excess water that has accumulated, the solution is to place a “shunt” in the brain. This piece of medical hardware acts as a catheter.
Dr. Figuereo walked me through the steps of the operation. He explained that results for success could only be ascertained two months after the surgery. Risk factors with the procedure run at about one in two hundred. Candidates must evaluate the risk/benefit ration. Dr. Figuereo emphasized that most patients were anxious to undergo the procedure with the hopes that the operation would reverse their decline.
The procedure consists of employing a laparoscopy, and takes approximately twenty minutes. First, a harpoon device is guided from inside the brain down into the abdominal cavity, where the excess drained fluid is released. Dr. Figuereo used the analogy of putting a hose into a fuel tank to extract gasoline – which is then placed elsewhere. Tunneling under the skin’s fat, the harpoon travels through the chest into the abdomen. There, the laparoscopic technology is used to remove the directive harpoon.
The brain water can now be drained into the abdominal cavity. Since the flow of pressure is not appropriate for all patients, valves in the middle of the tube work via a “dam theory,” making individual adjustments on pressure. Currently, programmable valves that work by remote control are available.
In speaking with Dr. Figuereo, it was clear that he was concerned many of the neurologists and psychiatrists people were seeking out for information had inadequate knowledge. He recommended contacting a doctor who specializes in NPH in the case of any warning signs of the disease.
Duane Hilton, an artist who lives in California, had the procedure. He told me, “It’s remarkable what happens after the operation. It just takes all the symptoms away.” He was originally told that he had arthritis.
Several websites give support and answer questions, including LifeNPH and the National Institutes of Health. The bottom line is to be proactive.