The Silent Signal

I was struggling with what we now know to be seizures. I would briefly lose focus for a minute or so but just thought it was nothing. As I was nearing my 30th birthday, and dealing with this for almost seven years, I decided to get it checked out just to make sure nothing serious was wrong.

After finally finding a doctor that would take me seriously and order an MRI of the brain, I was diagnosed with a brain tumor of the right side of my brain. Surgery was scheduled one month later to have it removed. The build up to surgery was scary but to have an incredible support group of family and friends as well as an outstanding care team made things as easy as they could be. Fortunately, the tumor was able to be completely resected. Originally it was thought to be a meningioma based on certain attributes but following the pathology report it was determined to be a mix of a grade 2 ependymoma and glioneuronal tumor.  The reoccurrence rate is low but my care team is focused on closely monitoring any changes that may occur for the next few years with routine MRIs and appointments.

At first it was shock. Given how quiet my seizures were, I never thought it would be a brain tumor diagnoses. Once my wife and I met with the surgeon and other members of the care team, we gained a lot of confidence and trust in the entire process and what life would look like post-surgery. This made it much easier to accept the diagnoses and come up with a plan for how to move forward.

Community was everything for me. After being diagnosed, I needed to read all I could and educate myself. It was so helpful to find stories from others to see what their experiences were and how they recovered. I needed to know that I wasn’t alone and that this road, while scary, had a light at the end of it.

I was diagnosed with my brain tumor on May 13th, 2024. At the time, I had no idea what my life would look like in 6 months, 1 year, etc. After my first surgery and finding NBTS, I wanted to give back to the community and raise awareness. I wanted to share my story to help the next person who is scared and unsure of what the future looks like. This May will be 1 year post-diagnoses. I am back to running and cycling. I’m back to adventuring with my wife and dog. And I’ve grown as a human through this experience. I want others to know that you are more than your diagnoses and while it feels really scary right now, there is a light at the end and so much support to help get you there.

I wish and hope for more patient advocacy. I want others whether a patient or caregiver to know that it’s OK to ask questions, get second opinions, etc. Brain tumors and the experience is different for everyone so if you feel like you have questions or need more information, never hesitate to ask.

TAGGED WITH: Ependymoma

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