Our patients’ stories: Treating “all” of Courtney’s headaches

left to right: Alyssa Lebel MD, patient Courtney Macari, Victoria E. Karian, RN, MSN, CPNP, and Lori McDonald-Nolan, RN

School can be hard for any kid, but do you know what it’s like to be in class with really bad headaches that make you want to go home every day, or just not get out of bed? That was my life for some time, until Boston Children’s Hospital helped me get better.

My name is Courtney Macari, and I am 12 years old. When I was only five I had a traumatic brain injury. One day when the whole class was out in the playground, a boy ran into me, bouncing me into the playground slide. When I got up off the ground all of my friends told me that I had a huge bump on the left side of my face. I went to the teacher and told her what had happened, so she sent me to see the nurse. The nurse looked at me and then called my dad, Reggie, to take me to the hospital. At the emergency room the doctors told us that I had a concussion and sent me home. Hours later I had a terrible headache and severe vomiting, so we went back to the emergency room. On that second hospital trip my mom, Nancy, my dad and I were told the worst news—I had a bleed in my brain and needed to be taken in an ambulance to Boston Children’s.

Ed Smith, MD

After a few days in the hospital I was sent home, but I never really got better. I kept getting really bad headaches, and the doctors kept trying different medications, but none of them helped. My neurologist then ordered an MRI and told us we needed to go see a neurosurgeon, Dr. Edward Smith, because I had a Chiari malformation. My mom and I went to see Dr. Smith thinking there was nothing to worry about, but we were wrong. Very wrong. Dr. Smith told us that the tonsils on my brain (small lobes at the base of the brain) were descending down and contributing to my bad headaches and that my spinal cord might be involved. I ended up needing a Chari Decompression. To do so, Dr. Smith removed half of my first vertebrae, made the base of my skull wider and removed part of the lining of my brain. He then reconstructed the new lining with Alloderm (this stuff that looked and acted a lot like the original lining).

I had to stay in the hospital for a while. It was pretty tough but the Child Life Specialists played games with me and sang songs, so it wasn’t as bad as it could have been. I got home and after a while got to go back to school. I never got rid of my bad headaches and they actually got worse. This was disappointing, but not surprising because Dr. Smith told me the Chari Decompression might not make my headaches any better.

Dr. Smith told my mom she should get me into the Pediatric Headache Program at Boston Children’s Hospital at Waltham. I had a consultation with Dr. Alyssa LeBel when I was seven, and it was the best day ever, because that was the day Dr. LeBel told me she could help me! Dr. LeBel took the time to explain to me why I felt so bad all the time. She said that my nerves can short circuit and that is just the way I am wired now. It is really hard for people to understand how much pain I can be in because I “look fine.”

Alyssa LeBel, MD

No one would ever know I had brain surgery unless they saw the scar down the back of my neck. She also took the time to talk with me about how nervous I was about possibly getting hurt again or having to have surgery again. I had a lot of anxiety, but I finally felt like I met someone who understood me. I just wanted to be able to be a kid and not in pain. Dr. LeBel, nurse practitioner Victoria Karian and nurse Lori McDonald-Nolan tried some different medications, but I still had a lot of side effects that did not make it worth it to stay on them.

The Headache Program suggested I try acupuncture with Dr. Lin, who is also located at Boston Children’s Hospital at Waltham. They said acupuncture could possibly help with my headaches and my pain. That was good because it was not a medication, and I had problems with some medicine’s side effects. Dr. LeBel also suggested physical therapy and therapeutic horseback riding—both really help me a lot. Dr. LeBel and everyone at the Headache Program really care about me and treated “all of me”, not just my headaches.

Courtney's team at Boston Children's Headache Program

I have been through more medical procedures at 12 than most people will have in their lifetime, and my mom and dad tell me that’s what makes me special. I want all the other kids out there to know that no matter how bad they feel they are not alone! I am thankful for all of the care I get at Boston Children’s.