Justin’s Story

From Headaches to Moyamoya

A mother’s story

Justin began complaining of headaches when he was just 5 1/2 years old. We brought it to the pediatrician’s attention a year later because Justin was often tardy to school due to headaches. The pediatrician said it was probably migraines, given our family history. So, we began a headache diary and tried to find the trigger, but to no avail. We had a CT scan done and nothing was found.

Another year passed and his headaches worsened in frequency and intensity. We told the pediatrician we wanted to see a specialist. When Justin was 6 1/2, we met with a local neurologist. At his direction, we again kept the headache diary and began a daily medicine to lessen the migraines. There was no change. Instead, Justin developed numbness in his tongue and left arm and leg. Oftentimes, the numbness did not precede or follow a headache. We had two EEGs done and, again, nothing was found.

We went back to the pediatrician and told him of these other symptoms and said we wanted Justin to be seen by a neurologist at Boston Children’s Hospital (“BCH”). When we first called BCH for an appointment, we learned that the next availability was 10 months away. We called every day to get in on a cancellation. Thank god we did. A wait of 10 months could have been too late! When we met with the BCH neurologist, she also thought it was “just migraines,” but because of our persistence, she decided to change Justin’s medicine, do blood work and order an MRI “to rule out anything else.”

The MRI showed moyamoya disease!

We had the MRI on Saturday; we found out about moyamoya on Sunday, and the next day we met with Dr. Michael Scott, our neurosurgeon and a leading expert on moyamoya. Three weeks later, Justin underwent 8 1/2 hours of brain surgery. We learned by this that it was wise to rely on our instincts; no one knew our son as well as we did.

Justin will always have moyamoya. He continues to have massive migraine-like headaches, but his TIAs or mini-strokes are rare. His surgery was successful but due to the nature of this disease, it will continue to spread. He will have an MRI every year for the rest of his life and be monitored by doctors on a yearly basis. We hope that Justin will not need another surgery, but only time will tell. It is amazing how one’s whole life can change with just one phone call!

These doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one. -- Mark Schreiber Newsweek January 21, 2008