Living with Choroid Plexus Papilloma

In March 2021, my husband, Matt, experienced severe headaches and dizziness, leading him to the ER. He was initially sent home with a diagnosis of vertigo, but the symptoms persisted, bringing him back to the emergency room the next day. This time, doctors noticed calcifications on his brain and referred him to a neurologist.

Further testing revealed that Matt had a brain tumor. Because a biopsy wasn’t possible, surgery was the only option to determine whether it was benign. Thankfully, the procedure was successful, and they were able to remove the entire tumor. It was diagnosed as a benign choroid plexus papilloma, a rare type of tumor that was not expected to return.

However, during his routine MRI scans in 2024, we discovered that the tumor had grown back. After the second surgery, it was not able to be fully removed during surgery, so Matt is now undergoing radiation treatment.

When Matt was diagnosed with a brain tumor, our world was turned upside down. The first overwhelming thoughts were, “Is he going to survive the surgery?” and “What do we tell our kids?” The uncertainty of the future, combined with the responsibility of keeping our children reassured, felt like an emotional weight we weren’t prepared for. We had to find a way to balance our fears with strength, deciding what to share with them without causing too much fear, but still being honest. It was a tough journey, navigating between comfort and reality, all while trying to protect them from as much worry as possible. Despite the uncertainty, we leaned on each other, knowing that facing this together, while difficult, was something we had to do.

Finding a community to lean on was invaluable during Matt’s brain tumor journey. From our church family to friends and relatives, everyone reached out and asked us what we needed, and they delivered. Whether it was meals, help with the kids, or emotional support, they were there for us every step of the way. We simply had to let them know what we needed, and they made it happen. Their generosity and care helped us navigate not just the first diagnosis but also the recurrence. It was their support that carried us through the toughest moments and made all the difference in our ability to cope.

There’s also the challenge of processing everything in real-time. You’re in survival mode, but you’re also trying to maintain some sense of normalcy for your kids, keep up with your relationships, and somehow hold it all together. People often see the outward strength, but they may not understand the quiet battles happening behind the scenes — the emotional exhaustion, the moments of fear, and the intense mental focus needed just to get through each day.

One thing I wish more people knew about the experience of dealing with a brain tumor diagnosis is the sheer emotional rollercoaster it brings. It’s not just about the surgeries, treatments, and physical effects — it’s about the constant uncertainty, fear, and the overwhelming weight of having to navigate a path you never expected to walk. The stress doesn’t just come from the medical challenges but also from balancing the needs of family, work, and life while facing something so serious and life-altering. The mental strain on the person going through it, as well as their loved ones, is often underestimated.

It’s a tough experience, and the impact on mental health can be just as profound as the physical challenges. That’s something I wish more people could grasp.

TAGGED WITH: choroid plexus papillomas

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.