Cathy, 46

“One thing that takes my mind off my severe headaches is sports, especially baseball. I love to watch a good game and I do have a good swing.”

It was a normal day on Oct 10th, 2018.  I was home getting things done around the house and was talking to my daughter. Something she said made me laugh. As I was laughing, I felt light headed. I didn’t think much of it because that had happened on another occasion and my doctor said it was because my hemoglobin was low so I just assumed that was the problem and just thought to myself that I had to start taking iron supplements again.  Even though I had felt lightheaded, I felt fine and went about my day.

A few hours later, while in the kitchen thinking what to cook for dinner, along comes my daughter making laugh again, but this time I was laughing much harder.  I remembered feeling fine, just laughing hard at whatever my daughter said. Then, the next thing I knew, I was banging myself up against the fridge. I remember the scared look on my daughter’s face and she asked me if I was feeling okay. I told her I didn’t know what happened and she said that my eyes rolled back a little and it seemed as if I was about to pass out. When I thought all had passed, I noticed that my head felt different. To be exact, my forehead felt minty cold. It was a weird sensation and I knew it wasn’t normal, so I decided to head to the emergency room.

At the ER, I told them that I had experienced dizziness twice during the day and that my head felt weird and cold after laughing out loud. A CT scan was performed. While waiting on the results I was talking and acting my normal self until the results came in. The ER doctor informed me that I had swelling in my head, but since that was not his specialty, I had to stay until a neurosurgeon came in to see me.

I think my mind went blank at that moment and I wasn’t processing anything. The ER doctor went on to show me an image of “a normal brain vs an image of your brain,” as he put it. I observed the image and noticed that mine looked much larger. I ended up staying one week in the hospital waiting for a neurosurgeon.

Finally, the neurosurgeon came in and said simply, “you have excess liquid in your brain. I’m going to operate you tomorrow to put in a valve that’s going to drain that liquid. That valve is going to stay in your head constantly draining and that’s the only treatment.”

I was at a loss for words. I ended up having a problem with that doctor so I went to another neurosurgeon who decided not to operate immediately. Instead, he opted to monitor me a while. I still don’t know what triggered my symptoms when I laughed, but my life hasn’t been the same since. I’ve had a headache everyday ever since and I can no longer laugh hard without feeling horrible pain behind my ears. My doctor said I was born with severe hydrocephalus, but went 42 years without ever knowing.

While I do not currently have a shunt, the neurosurgeon did warn me that I might need surgery at any time to have one placed. I did have an appointment scheduled, but I had to cancel due to the COVID-19 pandemic. I was so looking forward to seeing my neurosurgeon since I believe my symptoms have increased.

Before being diagnosed with hydrocephalus, I knew nothing about this condition, but it has been a life changer ever since. In the future, I hope scientists find a cure for hydrocephalus and a treatment that doesn’t require patients to undergo surgery. For me personally, I hope that in the future I will soon be able to have at least a few days free of headaches!

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