Stronger than I thought: My life after brain surgery

Chiari malformation_Maddie HoltI realized something wasn’t right when I started high school. I was placed in a Fashion and Fabrics class where we learned how to sew. I knew it was not going to be easy for me because I am not usually the most creative. I put all my passion into sports, and sewing wasn’t my thing.

When we learned how to thread needles, I could never get it right. My hands trembled constantly — it seemed impossible. My classmates found my poor skills amusing. When I showed my mom how shaky my hands were, we laughed about it. We knew sewing wasn’t my forte.

But my shakiness wasn’t my only symptom.

I had a headache almost every day. I was constantly fatigued and napped whenever I had the chance — trying to sleep the headaches off. I got used to not feeling right.

Despite my symptoms, I made the varsity field hockey team. I was extremely happy, but the stress of getting to school, practice or a game when I was not feeling well weighed on my mind. I always played with 100 percent effort, but I was struggling to keep up with the high demands of the sport when I was fatigued. After every game or practice when I went hard, I paid the price with an awful headache.

As the year went on, my mom noticed a change in me. Although I seemed healthy on the outside, my parents and I knew something wasn’t right. My mom took me to my pediatrician to get my hand tremors looked at. My doctor thought I should see a neurologist to be safe. The neurologist recommended an MRI.

My diagnosis: Chiari malformation

My results showed a Chiari malformation — a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. My neurologist told us it could not explain the hand tremors, but it could definitely be the reason why I was not feeling right. She referred me to Boston Children’s Hospital to see Dr. Mark Proctor.

Chiari malformation neurosurgeon

When Dr. Proctor told me I needed brain surgery to feel better, I was truly shocked and really scared. Just the words “brain surgery” are enough to scare anyone. Dr. Proctor helped me feel comfortable and reassured my family and me that this was the best option. After several appointments, my doctors, my parents and I knew surgery would help me live a normal life again.

Brain surgery

My surgery was scheduled for Nov.12, 2012. This was right after the field hockey season ended, and I was ready to feel better again. Walking into Boston Children’s that morning, I felt uneasy, and my family was very nervous, but I knew I was in the best hands in the world.

Chiari malformation Dr. Mark Proctor and Maddie Holt

Surgery felt like it lasted a few seconds. My family waited five hours.

My advice for teens with medical issues
Take it day by day. You are going to feel better on some days than others.
You know your own body the best. If you feel like you are pushing yourself too hard on a certain day, take a break. You are stronger than you think.
Be patient. Going through this as an athlete was tough because I just wanted to get better. It’s difficult to be patient when all you want to do is play your hardest.
Take all the advice your doctors give you.

When I first woke up I was in a lot of pain, but I knew it was going to get better. By the fourth and fifth day, it felt like a light switch turned on. I started to bounce back. I was discharged after five days. I was ready to get back home.

My friends and family were extremely supportive during my recovery. It took me four weeks to get back to school and 10 weeks to get back on the hockey field. I felt like a brand new person, and my quality of life was improved.

After surgery, I slowly got back into doing the things that I loved to do. I still have hand tremors but am able to do the things I enjoy. Playing field hockey without a headache made the surgery worth it.

Three years after my brain surgery, I am studying psychology at Southern New Hampshire University, and playing college field hockey and running track without feeling like I used to. I love it. The decision to have the surgery was one of the hardest ones I have ever had to make, but definitely the best one. Today I feel better than ever.

Chiari malformation_Post surgery
Maddie is back on the field and stronger than ever.

Learn more about how Boston Children’s treats children with Chiari malformation.


About the blogger: Maddie Holt is a freshman at Southern New Hampshire University, studying psychology. She participates in two college sports — field hockey and track at the NCAA D2 level.