Sadie’s Story

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When I was 4 years old, I was diagnosed with a 7cm ganglioglioma brain tumour. I had little seizures where I couldn’t answer questions and had jumbled speech, and my face would twitch a lot. When my parents noticed this, they took me to the Alberta Children’s Hospital to remove the tumour from my left temporal region. After the left craniotomy, my seizures stopped and I took anti-seizure medication for a year afterwards. I seemed to recover very quickly and everyone thought that it was the end of the neurological problems, until summer 2019.

I was in Grade 11, and that was when I started having almost continuous head-stabbing headaches. I also had nausea throughout the day and after every time I ate. Doctors thought it was anxiety or migraines but nothing they offered seemed to help. Several months later, I started to have four or five complex partial seizures each day, where I would zone out for about a minute and then remain very confused for a few minutes afterwards. I felt horrible in school. Some investigations discovered that the tumour from my childhood had caused maldevelopment of some surrounding structures including my left hippocampus which is where the complex partial seizures were originating from.

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Fortunately, it seems that my speech and memory centre probably developed on the right, although it took many different tests over the course of a year to figure that out. We don’t know when the seizures actually started or if they were happening all along after the tumour surgery. Over several months, the complex partial seizures started to get much more frequent and noticeable. I began taking anti-seizure medicine with little to no success in controlling my symptoms, and with many sickening side effects. I ended up having five EEG’s over the year. One was in the hospital for a day, two were at home for two days, and two were 5-day stays at the Children’s Hospital. After several of these hospital stays in 2019 and 2020, my doctors discovered that I actually was having around 50 small seizures every day causing the headaches and the nausea as well as the confusion - my brain was very active but misfiring. As a result, they did another two brain surgeries in June 2020: one to insert 7 EEG probes to track my seizures with more detail, and then a second to remove my left hippocampus. These surgeries appear to have successfully stopped my seizures, although right now I am still taking anti-seizure medicine. 

 

Currently, I am 18 years old. I’m graduating high school and going into University of Calgary for a bachelor in Community Rehabilitation and Disabilities, and I hope to be an occupational therapist for people who have disabilities like me. I’ve been seizure free for 1 year since the final surgery removing my hippocampus. I’ve become so much healthier, with the ability to eat again and no more headaches anymore. I’ve raised awareness about epilepsy in many different ways, such as speaking to my school and youth group, and by posting things on social media about epilepsy.

I’ve also received a scholarship from the Edmonton Epilepsy Association for raising awareness about living with epilepsy. These years with epilepsy and with the 3 surgeries have really impacted me, with all the feelings of fear, anger, pain, and yet sometimes even joy with the amount of gratitude I have for being healed. Finally finding some relief has helped me to understand the importance of continuing to raise awareness of epilepsy in the community so that our doctors can continue to find new ways to help with this disease that changed my life.

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