What it’s like to have brain surgery: Peyton’s story

During the summer before my junior year of high school, I started getting a lot of dull headaches at the base of my head and upper neck. I got so used to them that I built up a tolerance to the pain — I didn’t see them as a big deal, or would make excuses for them, like dehydration or too much screen time. Then I started to have a strange zinging feeling in my inner foot when I turned my head to the opposite side too quickly. When I mentioned that to my mom, we decided it was time to see a doctor.

What is Chiari malformation?
A Chiari malformation is an abnormality in the back of the head where the brain and spinal cord meet. It causes some of the brain tissue at the base of the skull to be pushed into the spinal canal. This can cause pressure on the brain and block the normal flow of spinal fluid in and around the brain. Its symptoms can include headaches and neck pain.

Eventually, the doctors at Boston Children’s Hospital narrowed the cause of my headaches down to two things: migraines or Chiari malformation. The not knowing was really hard. When my MRI scan came back and confirmed a diagnosis of Chiari, I was scared — I knew that meant I might need brain surgery. I had already tried so many medications without relief and wasn’t sure if surgery would even help.

I had concerns about surgery. I worried about what recovery would be like, what would happen if something went wrong, and if I’d be able to get back to dance and other activities. My surgeon, Dr. Scellig Stone, and his team helped ease my fears by letting me know that they do these surgeries often. It was nice to know it wasn’t something new for them. They also explained the reality of what people go through when recovering, which was nice. There was no sugar coating — and my recovery actually turned out much easier than I expected.

It’s only been a few months since my surgery but I feel great. I still sometimes get headaches, but they’re more from my recovery than anything else. Dr Stone said I could still experience some headaches throughout life, but not nearly as often — which is still so much better. I haven’t been able to get back to dancing yet, but I hope to soon. I’m back at my part-time job and am waiting to see what colleges I’ve gotten in to. I also love listening to music and painting custom shoes and jean jackets for friends.

I used to make excuses for my pain and think things were normal because I had been dealing with them for so long. Now, I’ve realized these things are not normal and want other people not to be scared tell someone about their pain. Also, remember that it’s brighter on the other side and definitely worth it to get surgery. It also helps you realize many things about yourself that you wouldn’t have known otherwise.

Learn more about the Department of Neurosurgery.