The top two questions I’m asked when people hear I had brain surgery for NPH:
What is that?
Normal Pressure Hydrocephalus is reversible dementia.
What causes it?
For a long time I didn’t know. NPH is widely misdiagnosed or undiagnosed. Also doctors don’t say the word dementia very often. After many tests over several months, with specialists, NPH was explained to me as a “reversible brain condition” (not dementia).
Doctors searching for a diagnosis of my forgetting and falling asked if I’d had any traumatic brain injury. Hmmm. There were two car accidents, at age 19 and then again at 30. The first time I was thrown from a car window by a crash on the side of a freeway, Then more than a decade later, I was broadsided on a main road during rush hour. I was not hospitalized, but briefly checked and let go. Nobody mentioned TBIs.
Now I know those accidents caused TBIs that brewed in the background of my brain for decades, even as I married, had children, attended colleges, acquired degrees, worked, wrote, hosted dinner parties and weekends at the cottage. Read novels by the thousands. Attended a book group for many years. Went to at least one writing conference every year. Had a fun life full of friends, family, and love.
After the second car accident, I began to experience panic attacks when in vehicles. As a passenger and even driving. I sought help, received medication and all was well for many many years. Because I took my meds for anxiety and later migraine my full happy life scrolled along. I didn’t know NPH has an incubation phase of 50+ years following a TBI or two. Or that migraines, in my case, were not really migraines but symptoms of NPH.
The cause of many instances of NPH remain unknown. What is known: age-related shrinkage of the brain and ensuing cerebral fluid settling into the widening ventricles asserts a “normal pressure” on the areas of the brain that control balance and memory, and more, but not so it’s noticeable…until it cannot be ignored.
Unless it is. Many of the symptoms of NPH mimic other diseases of the elderly: Alzheimer’s, Parkinson’s, neuropathy, stroke, and brain bleed were some my doctors checked before I got the gold standard test for NPH: the spinal tap. My result was conclusive and a neurosurgeon concurred.
It is estimated that 80% of older people (age 70+) in the US live with undiagnosed or misdiagnosed NPH. This, despite NPH being one of the only forms of dementia with a known cure…if you have a shunt implanted in your brain by a neurosurgeon. Which I did a couple of months ago. Within a week or two, I felt almost like my old self. My way-old self. I remember almost everything I read or hear. I remember recipes! I look in the fridge, see what’s there, and know which meals can be assembled plus have the energy to do it and the dishes.
So much has come back to me and I’m grateful, although I’ve learned it can take six months or even a year for neurons to forge new pathways through the central nervous system. Some people continue to improve even after five years.
A big difference: everything is slower now, like writing this blog post or the revision of the messy first draft I barely finished before my medical mystery took center stage. Still, after not writing a coherent sentence for more than a year, that’s fine. Lingering over just the right word or hitting on an unexpected connection that makes the plot tighter, brings me buckets of joy. Joy. Now there’s an emotion I had not felt in many years. NPH tamps down the feelings, both good and bad. At least it did for me. Everybody’s experience with NPH is different.
I wish more people knew that there is hope, even when life seems hopeless. That’s why I wrote this today instead of working on my novel.