Carol

I have normal pressure hydrocephalus (NPH). I consider myself well-educated, yet I had never even heard of this condition before my diagnosis. My journey has felt absolutely surreal. 

I live in a very rural area of Costa Rica, with one public hospital I had never even entered, despite living here for 12 years. We have universal health care, so my entire diagnosis to recovery cost just $120, from start to finish. Wow!  

At first, I attributed my symptoms to age. I am 73 years old and, at the time, was under unusual stress due to a recent move into a new house. My feet hurt and felt heavy. I was urinating more often than usual. My memory was very poor —I was even having trouble remembering what I’d read. I would start chapter two and have no memory of what happened in chapter one.   

Finally, one day, my housekeeper said to me, “You have asked me six times this morning what day it is. Are you okay?” Then I tried to pay an Uber driver—someone I knew quite well —double the cost of the ride. I also bought a house, without a home inspection, accurate survey records, or any understanding of the legal processes. That’s when my housekeeper insisted we go to the local clinic, and they referred me to the hospital. 

There, I had an MRI and was immediately admitted.  By that afternoon, the neurosurgeon came to my bedside to chat. He told me I needed immediate surgery, but assured me he was 100% confident he could fix me. He’s a Cuban-trained doctor who is very well known in Costa Rica. I was then placed on a waiting list for surgery.  

It took 20 days. I was miserable. I wasn’t allowed to shower or walk around by myself, for fear that I might fall. I had fallen six or so times at home and, fortunately, hadn’t broken anything. At one point, I called the American Embassy to report that I was being held in the hospital against my will.  

I even snuck out of the hospital in my flimsy gown —only to be returned by the local police. They eventually had to restrain me to my bed. I would call friends in the middle of the night, begging for help to escape. The neurosurgeon finally expressed his frustration with me to my housekeeper.  

She told him the only solution was to hurry up and operate. One week later, my head was shaved, and I was rolled into the operating room. No one ever explained my true diagnosis, that they would shave my head, or that they would be placing a valve in my head with a tube to my heart —a ventriculoatrial (VA) shunt. They also never performed a lumbar tap. 

I awoke after surgery and immediately felt better. I could walk better than ever, and my feet no longer hurt. I was not restrained to my bed anymore. I remembered almost nothing of the two weeks leading up to my hospital stay, but I had very vivid memories of my youth.  

When it was time to be discharged from the hospital, the surgeon refused to sign my release papers because I live alone, and my new house was not suitable for someone recovering from brain surgery. I remained in the hospital until a place opened up for me at a rehabilitation center, where there was a nurse on site and meals and housekeeping were provided. I spent two weeks there, still with stitches in my head, receiving antibiotics, and walking as often as possible with the help of a nurse.  

The long hospital stays turned my muscles into jelly. It wasn’t until I read my hospital release papers that I learned I had been treated for normal pressure hydrocephalus (NPH), which sounded very harmless.  

The surgeon wanted to see me for a follow-up visit in six weeks. During my follow-up, I had another MRI, and the stitches were removed. By the time I returned to see the surgeon, I had found the wonderful Hydrocephalus Association (HA) NPH support group, and Billy Joel had introduced many people to NPH. I had answered lots of my questions by reading as much as I could online.  

I spoke with friends, each of whom had an anecdote about my odd behavior leading up to surgery. I remember almost nothing. I had considered my life quite bizarre before all of this —I had been working as a crime reporter for an English-language newspaper, surrounded by drama, danger, and exotic people.  

But nothing compares to suddenly losing your mind and ability to walk, only to wake up with a hole in your head and no clear idea how it got there. I’m so lucky the surgeon knew what was wrong, my friends managed my life for me, and I was able to afford an expensive and uncommon operation with a gifted neurosurgeon. 

To my fellow Hydro Warriors: Pura Vida.  

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