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It’s estimated that more than 700,000 Americans are living with Normal Pressure Hydrocephaly (NPH).

 BUT— less than 20% of that number are appropriately diagnosed. The other 80%—560,000 people— have been misdiagnosed as having dementia, Alzheimer’s, or simply “getting older.”  To put that number  in perspective, it is roughly the same as the 2019 population of Albuquerque, New Mexico.

Why this is important

Because Normal Pressure Hydrocephaly  is one of the few causes of dementia that can be controlled or reversed with treatment. (Source: Hydrocephalus Association.)   

My Connection to NPH

A longtime friend phoned last weekend because she wanted me to know what had been going on in her life and why I might have noticed changes in  our relationship. Her voice fluctuated between joy and anger as she told me her story (See below)

What is NPH?

The brain has cavities called ventricles that normally contain cerebrospinal fluid (CSF) which cushions the brain and spinal cord. Ordinarily your body makes just enough CSF each day and absorbs that same amount. Sometimes, however, too much fluid can build up in the ventricles, leading to Normal Pressure Hydrocephalus (NPH).  (Source: Johns Hopkins Medicine)

What are the Symptoms?

Among adults 60 years of age and older, the common signs of hydrocephalus are memory loss, progressive loss of other thinking or reasoning skills, difficulty walking (often described as a shuffling gait or the feeling of the feet being stuck), poor coordination or balance, and loss of bladder control or a frequent urge to urinate.  (Source: Mayo Clinic)

How is it diagnosed and treated?

Your medical team may need to do a number of tests to confirm NPH, such as:

• Physical exam and review of your symptoms
• Evaluation of the way you walk
• CT or MRI scans of your brain
• Spinal tap to remove a sample of your cerebrospinal fluid 

A commonly used treatment for NPH is surgery to place a tube, called a shunt, into the brain to drain the excess fluid. The shunt is inserted into a ventricle in the brain and then passed under your skin from your head through your neck and chest to your abdomen. The extra fluid in your brain flows through the shunt into your abdomen, where your body absorbs it. The ventricles in your brain may then go back to their normal size. The shunt stays in place as long as there is too much CSF in the brain. Implanting a shunt doesn’t work for everyone, but some people do benefit from it. Getting prompt diagnosis and treatment helps improve your chances of a good outcome. (Source: Johns Hopkins Medicine)

My Friend’s Story

 A few years ago she began sensing that her memory was failing.  At the same time, she was developing problems with her balance and had had a couple of scary falls while out on walks.  What was going on?  Her primary care doctor didn’t have a clue.  So her husband contacted his doctor, who suggested seeing specialists.  

Over the many months that it takes to get appointments, they consulted with three neuropsychiatrists and two neurologists. During this time, she had more than one MRIs done of her brain.  The first specialist told her  she was fine, that the MRI just showed age-related issues. “Don’t worry,” he told her. “You’re just getting older.”  A second specialist ignored the MRI and administered a question-and-answer test designed to identify dementia or Alzheimer’s. My friend says she “failed” the test and was told she did not have Alzheimer’s, but she probably had dementia. As for her balance problems, they were generally attributed  to previously-diagnosed neuropathy.

 Meanwhile, her symptoms were worsening.  Frustration is a word she says that barely describes what she and her husband felt, the impact it was having on their marriage—but they continued seeking answers. Finally, a month ago, a fourth neuropsychiatrist told them that her MRI showed that the ventricles of her brain were three to four times larger than normal. He said she needed to see a neurosurgeon.  A personal friend in the medical field intervened, securing an immediate appointment with a neurosurgeon who specializes in NPH.  A subsequent spinal tap confirmed the diagnosis.  

After three years of searching for answers, she will have a shunt inserted within weeks.

CONSIDER:

If you or someone you care about is exhibiting any of the above symptoms,  who would you turn to? Where could you find a place to shine light on what is happening?  How would you know you’re getting accurate information?

To learn more

On June 26-27, the Hydrocephalus Association is offering their 2020 National Conference online, free of charge.  The goal of the conference is to address the complexities of living with hydrocephalus.  To learn from world-renowned medical professional and researchers.  The conference is open to everyone impacted by hydrocephalus from patients and families to medical professionals. For more information and to register, go to https://hydrocephalusconference.org .

Additional Resources:

Hydrocephalus Association — https://www.hydroassoc.org/normal-pressure-hydrocephalus/

Johns Hopkins Medical–https://www.hopkinsmedicine.org/health/conditions-and-diseases/hydrocephalus/normal-pressure-hydrocephalus

 The Cleveland Clinic–  https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph   

Mayo Clinic– https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604

Alzheimer’s Association/Alzheimer’s Disease & Dementia Help–https://www.alz.org