This previous weekend a few lab members and I took a trip to Cleveland in order to attend a neurosurgery conference called, the Brain Recovery Project. This conference is designed to allow patients, family members, clinicians, and researchers to convene and discuss the treatment of epileptic patients with large brain resections.
Now, you may be wondering what exactly is epilepsy? And, what is a brain resection?
Epilepsy is a common neurological disorder characterized by seizures. When we think of a seizure, we often think of muscle and body convulsions. In reality, these convolutions are the result of abnormal and intense brain activation. Seizures are often described by doctors as an electrical storm in the brain. The severity and frequency of seizures associated with epilepsy differs greatly depending on the individual. While approximately 60% of epileptic children’s seizures are controlled with medication, 40% suffer from seizures which are drug-resistant. If the seizures of drug-resistant epilepsy are severe enough to inhibit development and cause brain damage, patients and their families may make the tough decision to be treated with a brain resection.
A brain resection involves surgery to remove the region of the brain from which the seizures, or “electrical storm,” are originating. Many of these epileptic patients must have an entire hemisphere (right or left half of the brain) removed in order to successfully control their seizures. The idea of removing a large portion of ones brain sounds very, very scary. What we are finding, however, is that many of these patients make amazing recoveries and live full seizure-free lives after their surgery. Despite recent advancements, there is lack of research regarding the treatment and development of brain resection patients.
My lab and I specifically attended this conference in order to research how the visual system recovers from brain resections. We sought answers to questions such as, why do some patients regain reading abilities while others do not? How is the perception of faces and contrast altered in these patients? Luckily, the patients at this conference were eager to help us answer these questions. Over the course of two days, 35 amazing patients came to our testing rooms in order to participate (we set up two make-shift testing rooms in the hotel where the conference was taking place). Thanks to these participants, we now have an unprecedented amount of data and may be able to find some answers to these questions.
On a more personal note, I didn’t expected to be so impacted by my weekend at this conference. At first, I was very nervous for the conference. Many of the patients signed up for our study were children, and I had never conducted research with children before. What I found, however, was that I loved interacting with the participants of our study. I enjoyed helping them to understand the tasks we needed them to do, and I loved answering their wide-array of questions. Most of all, I enjoyed the small talk we shared and hearing about their hobbies, interests, and opinions. My time at this conference has convinced me that I am interested in patient research, and that I like interacting with participants very, very much.
It is hard to express and fully understand how this conference has impacted me, but I feel as though I have undergone a major positive change and a shift in my world view. I am thankful for my advisor and the graduate student in my lab for including me on this trip. I am also thankful to the patients and family members at the conference for being so welcoming and sharing their stories with us. I hope I am able to attend again in the future, and until then, I wish them all the best!