Diagnosed at 60
Al
Story Written by Self
I first learned that I had hydrocephalus several years ago, but at the time, it wasn’t causing any major symptoms. Then, about two years ago, I suddenly became very sick. My legs grew weak, walking became harder, my memory declined, and everyday tasks—simple things like washing the car or mowing the lawn—completely wiped me out. I tried using a weighted vest while mowing or spending time on the elliptical to strengthen my legs, but nothing helped.
I finally went to my doctor, and my wife insisted, “Don’t tell him about your hydrocephalus, otherwise they’ll focus only on that.” I tried to explain, but once the doctor watched me walk, he immediately referred me to a neurologist. That night, my wife went through a late-night search on hydrocephalus symptoms. When I woke up the next morning, to my surprise, she told me, “I think you really have this.” After further evaluation, it became clear that normal pressure hydrocephalus (NPH) was the true cause of my symptoms.
Even after receiving the diagnosis, I convinced myself that I could live with it. I felt that now that I understood the problem, I could manage it on my own. In truth, I wanted to avoid brain surgery because I was terrified of it. However, my condition kept getting worse.
One day, our family took a trip to the zoo. I started out feeling okay, but by the end I was holding my wife’s hand, struggling to stay balanced. My legs kept giving out, and I had to squeeze her hand tightly just to keep from slipping. It was the first time she fully saw what I was dealing with. My wife and my best friend looked at me and said, “You need to have the surgery.”
Eventually, I realized I couldn’t go on like this and finally agreed to consider surgery. I was ready. I learned that I needed a spinal tap first to determine whether I’d even be a good candidate for a shunt.
The spinal tap turned out to be a critical moment. The improvement was immediate. It was only temporary, and my nerves were on edge, so I didn’t get to enjoy that brief window of relief as much as I should have—but it proved that the surgery could help.
Having the shunt placed was scary, no question. But if I had to do it again, I would do it in a heartbeat.
I walked out of the hospital without shuffling. I was still weak and tired, my neck was really sore and tight, but I walked! Recovery was slow, but it improved over time.
Even after having the shunt placed, I still face a few challenges—remembering numbers, times, and dates; needing more rest and dealing with neck stiffness when I’m stressed. But the difference is incredible. I can go up and down stairs without feeling like I’m about to fall. And I’m even back to playing pickleball—with head protection.
If you’re wondering whether the surgery works, only you and your doctor can make that decision. But it has been life-changing for me.
Before surgery, I genuinely feared I was dying. I didn’t know what condition was slowly taking away my strength and balance. My walking was deteriorating, my memory slipping, and every effort I made to “fix” myself only left me more exhausted.
Now, I’m living my life again!
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