Epilepsy: My Story
By Ann O’Connor
I had the privilege of speaking at the Global Meet and Expo on Neuroscience & Brain Disorders this past April 7/8 in London, England. At this conference I shared my story, that I beat Epilepsy.
I was 2 ½ when epilepsy decided to enter my life, but being the stubborn kid that I was, and still am, I never let it confine me. I still played like all the other kids, climbed trees, played soccer at 4 years old. It, for me, was more of being careful and cautious of my surroundings. When I was 3, I had a seizure that lasted a little too long for my brain's liking and it caused my entire right side to go paralyzed. Even though the doctors told my parents that I would never be right handed, have speech problems etc, I was only in that state for a year. And I am right handed and speak just fine. My seizures actually stopped when I was about 9 and I was slowly weaned off all my medications.
Then, just like that at 20 years old, my seizures decided to come back. I was devastated, I had just moved out into my first apartment. This was a life changing time for me, as I lost my driver's licence and that was like having my freedom taken away. I had to be a year seizure-free to drive again, and that was awful, but I decided to work with my situation instead of against it. After several years of having grand mal and petit mal seizures and so many medication changes I decided to get a second opinion, see a different neurologist, and that decision changed my life. That is how I came about having neurosurgery.
It was 6:30 AM on December 03, 2002 in Edmonton, Alberta. I remember being wheeled down the hall at the University of Alberta Hospital by the porter, with the silence it felt like we were the only ones in the building. You could hear a pin drop!
I had lived with epilepsy for almost 20 years of my life and that was about to change. Left Selective Amygdalohippocampectomy is the surgery I was about to undergo and it is what cured me of my seizures. The left parahippocampal gyrus, left amygdala and left hippocampus were removed; structures within the left temporal lobe. I had 6 grand mal seizures 2 days before the surgery and I have not had one since. I was CURED!
Since my surgery, I have accomplished some amazing tasks in my life. I have written three books, was asked to be a Canadian Advocate for Epilepsy in 2012 and have been a motivational speaker for over 20 years. Helping others is my passion, my calling. I want to educate others internationally from a patient’s point of view, and help them understand that they are not alone when it comes to living with epilepsy.
I have made speaking at medical conferences/seminars and local events my goal. I feel that letting medical professionals know what surgery was like from a patient's perspective is very important and helpful to them in several aspects. I was never told about the side effects from brain surgery and I wish I would have known beforehand; I still would have continued regardless, but a little preparation of what might come would have helped.
I have spoken at several amazing medical conferences in the past 10 years; Cape Town, S.A - Baltimore, USA - Chicago, USA - Madrid, Spain - New York, USA and just recently in London, England. Sharing my story in London on April 7th was absolutely amazing. The others in attendance, doctors, neurologists, engineers and psychologists, had some fantastic questions for me after my talk. I used to think, “who wants to listen to someone my age talk about their medical past?”
But you know what? I found out that a lot of people do.
Epilepsy Awareness will be part of me for a very long time, I can't wait for my next conference, or local event. Stay positive.
Facts about Epilepsy:
You can't swallow your tongue during a seizure.
You should never force something into the mouth of someone having a seizure.
Don't restrain someone having a seizure. ...
Epilepsy is not contagious.
Anyone can develop epilepsy at any age.
Seizure symptoms can vary widely. Some symptoms include:
Temporary confusion
Uncontrollable twitching or jerking movements of the arms and legs
Loss of consciousness or awareness
Psychic symptoms, such as fear, anxiety or déjà vu.
What is epilepsy - Epilepsy is a brain disorder that causes recurring, unprovoked seizures.
Epilepsy involves different types of seizures classified as either focal (partial) or generalized, based on where they originate in the brain. Focal seizures arise in one area of the brain and can be either aware (simple partial) or impaired awareness (complex partial). Generalized seizures involve both hemispheres of the brain and include types like tonic-clonic (grand mal), absence, myoclonic, atonic, and clonic.
I Beat Epilepsy - it didn't beat me!
Ann M O’Connor
Epilepsy Advocate for Canada