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!

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.