Ann Marie Gillie
  1. Spruce Grove, Alberta, Canada

Correspondence Address:
Ann Marie Gillie
Spruce Grove, Alberta, Canada


Copyright: © 2014 Gillie AM This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

How to cite this article: Gillie AM. Epilepsy needs to be talked about, who wants to go first? I do!. Surg Neurol Int 08-May-2014;5:65

How to cite this URL: Gillie AM. Epilepsy needs to be talked about, who wants to go first? I do!. Surg Neurol Int 08-May-2014;5:65. Available from:

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It was 6:30 am on December 03, 2002 and I can remember being wheeled down the hall at the University of Alberta Hospital in Edmonton, Alberta, Canada by the porter, with the silence it felt like we were the only ones in the building. You could hear a pin drop. I was then rolled onto an elevator, it was freezing cold and the porter told me that we were almost there, to the surgery room. Most people would probably be nervous even scared, I was about to undergo neuro surgery that was hopefully going to change my life forever. I was actually the opposite of scared, I was ecstatic and from my smiling I think the porter thought I had already been medicated, not at all, I was just looking forward to my life changing. I will rewind back to how and why this was even taking place.

It all started for me in 1972 when I was 3 years old. One evening my brother woke my parents up in the middle of the night saying that I was making strange noises, moving all around and it was scaring him. My parents took me right to the closest hospital in Toronto; Ontario, where we were living at the time. My temperature had reached 102 degree, I was burning up and at this point my life was about to take a huge turn for the worse. I had my first convulsion, seizure, and it was devastating for my parents, I was so young. My parents were eventually told that I had epilepsy.

Phenobarbital (phenobarb) was the medication I was put on and one I stayed on for the next 6 years. Before I started nursery school I suffered one of the worse seizures yet, it left my right side paralyzed. I would have to drag my right leg when walking and my mom tells me she would have to do daily exercises with me to get my muscles and strength back working. My parents were never told why this happened, a magnetic resonance imaging (MRI) was not done back then, I actually didn’t have my first MRI till my early 30s. The most frustrating thing for my parents, or maybe more upsetting was that they were told that this was probably a permanent thing, me being paralyzed, what the doctors didn’t know was “I am a very stubborn girl” and I wasn’t going to stay like this. They prepared my parents for me being in special needs classes, never being right handed and that I would most likely have speech impairments.

Well after about 6 months I miraculously came through, started getting movement in my right leg and arm and my speech was just fine, perfect for that matter. I continued on the medication and did make it through school, not in special needs classes either. I went till I was 9 years old and my seizures were actually tapering off, they were gone. I was kept on the phenobarb for a couple more years just in case it crept back, but they didn’t. I was about 11 years old and they said let's take Ann off the meds she is doing great, what an awesome day.

Well I was seizure free, at least I thought I was. I had gone almost 11 years with no seizures, no auras, nothing, than one day when I was 20 years old (1990) it hit me like a brick wall. They were back. All I could think of is “WHY, what happened?” I was devastated. I had just moved out on my own, had my own car, a job, everything was going just like it should.

I was now back seeing a neurologist and yes put back on meds, which I hated but knew I had to take them. Tegretol and Topomax were two of the meds I would be on for the next 11 years. I did try others but the side effects for me were horrible, depression, weight gain, and low self-esteem. I had always been such a happy, vibrant, and energetic person, so for me this was like hitting a brick wall, again.

Even though the seizures were back I knew I had to toughen up, accept it and move on. I was and still am a very strong girl, with allot of positive energy, I wasn’t going to let epilepsy ruin me. When the seizures did come back I was not able to drive and for me that was one of the most frustrating things, but I adjusted. After going a year seizure free I was able to drive again, wow that time went on forever, so it seemed. It did take me almost 2 years to drive again, and for me being seizure free now for 2 years was a good sign that maybe this was it again, maybe.

More obstacles were about to be added to my life, but I was getting used to them. In 1994 I had my first son, Mathew, who is now 19. My pregnancy actually went very well, and yes I stayed on all my meds through the whole thing. The amazing part was that I didn’t have single seizure during the pregnancy. What really upset me though was about 6 ½ months into my pregnancy I had a physician who didn’t know me, tell me that my son could have several complications due to the meds I was on. I was devastated. But I figured this pregnancy was going perfect and I wasn’t going to let him ruin it for me. Mathew was born December 23, 1994 and was perfect, he had all his toes, fingers, no cleft lip, and NO problems at all.

Shortly after Mathew was born, the seizures returned AGAIN. I took a deep breath and thought what am I going to do? Well I never let the seizures interfere with what I liked to do in my personal life, I continued playing soccer, even went to boxing (just recreational) and was heavily involved on boards and committees in my community. I needed to keep my sanity and do things I loved doing. Time went by, seizures came and went and meds were changed a few times. Then I made a decision.

The decision I was about to make changed my life forever. I asked the physician I was working with, what he thought about me going to see a new neurologist, to get a second opinion. I was so excited that he also thought it was a great idea. I was working part time as a medical assistant in a Medi Centre close to where I lived. Even though I had seizures here and there, they were fine with me working there. The day came where I was booked to go see the new neurologist, I was so excited. I walked in with a very positive attitude and knew this appointment was about to change everything.

The appointment went awesome, the neurologist asked me so many questions, but the one that stood out the most with me was “have you ever been tested to see if surgery is an option?” I replied with a very strong voice, “NO”. Surgery had never been brought up in any of my appointments with my previous neurologist, just my meds were talked about and changed or me being told I need to lose weight, I was a few pounds over but nothing that was even worth mentioning. Seeing this new neurologist was the best decision I have ever made. A few weeks later I was called by the U of A Hospital in Edmonton, Alberta to schedule an appointment with a neuro surgeon. The meeting went extremely well, the neurologist I saw was amazing and had such a great attitude. He explained the testing and how it was going to take place; 8 days of having electrodes glued to my head to monitor where the seizures were coming from was what I was about to undergo. I can’t believe how fast they actually got me in, but it went so well. It did take me 3 days to have a seizure but then they came on like a waterfall, one after another. From that they were able to pin point exactly where the seizures were coming from.

Shortly after my week of testing I was brought back into the hospital to meet with the neuro surgeon. I was hoping this was the day, good things were about to happen and they did. He came right out and said “Ann you qualify for surgery”. I was speechless, but only for a second. I asked “can I go right now?” I am sure he was surprised how eager I was, but I truly was. The doctor went over the test results and used a lot of medical terms I wasn’t familiar with but luckily he explained them to me so I knew exactly what was going to happen.

From the MRI I was diagnosed with Mesial Temporal Sclerosis (MTS), which if I would of had an MRI when I was younger I might not of had to live with the seizures like I did, but that's in the past its time to move forward. MTS is scarring of the inner portions of the temporal lobe, which may be caused by head trauma, lack of oxygen or brain infection; however, it can also occur without any apparent reason to. It is said that MTS can cause a form of temporal lobe epilepsy, which would definitely make sense in my case.

I was very lucky that I got in for surgery only 3 months after the testing, I think I had my bags packed instantly, I suppose that shows I get a bit eager or even impatient. So as I mentioned at the beginning of my story, the excitement I had being wheeled into the operating room is something that I think about all the time. After being wheeled into the room I could see all the surgical tools laid out on the tables, there were a lot. I even mentioned to one of the nurses that I wish we could video tape the operation, she wasn’t sure how to read me, yes I was excited, maybe she was used to patients with a different attitude coming into that room.

Well as the anesthesiologist was prepping me I said thank you, he replied “you are going to be fine”, I knew that. I think I recall counting to 3 and from there I remember waking up late that evening in the ICU. I was quite dopey when I did wake up, not sure who was even in the room with me. It wasn’t till the next day that I was actually aware of what was going on around me. I felt the bandages on my head, and there was a lot. I asked the nurse who was in taking my blood pressure how I did, she laughed and said you were great, they wish more patients were like me. She told me I had 50 staples in my head, ouch I thought, but I couldn’t feel them. They did shave the entire left side of my head, which I wasn’t happy with but it was minor to what they had just done.

The actually surgery was called Left Selective Amygdalohippocampectomy, including the preparation, surgery, and intensive care afterwards, it was about 8 h.

When it was explained what was removed or what they even did, I was told that the left parahippocampal gyrus, left amygdale and left hippocampus were removed; structures within the left temporal lobe. For me they were a lot of big terms but I didn’t care I knew this surgery was going to work. I stayed in the hospital for 6 days, what surprised me the most was that I forgot how to walk, I honestly did. I asked the nurse if i could go use the washroom and she asked me to wait as someone would be right there to help me; I said I will be fine and she again asked me to hold on. I had forgotten how to walk, is this for real I thought. I then had a therapist come in the room and they explained why they were there, that we need to reprogram my brain to tell me legs to walk, it was crazy but true. I struggled for a couple days than it was like a magic wand, I was back walking again. For me going home was good, I needed to get back into routine things.

One of the side effects from the surgery was memory loss, short term; I had to sit down with another therapist and work on numbers and words like I was in elementary school again. Frustrating but it had to be done and I did pretty good, I knew this was going to be a struggle but it was also going to change my life.

If there is one thing that I wish I would of had explained to me better before the surgery, not that I wouldn’t of still done it, but I would of liked to have know was that depression is a huge side affect after any neuro surgery. I will tell you mine was horrible, to the point that I was suicidal, I lost friends, some didn’t understand what I was going through but luckily certain ones did. Depression is not something that can be ignored, people need to understand that getting help is not a bad thing, you aren’t doing anything wrong, getting help is doing something right.

Shortly after my surgery I started keeping a journal of my experience and eventually I turned it into a book. I would never have thought that I would publish a book, and I have actually written another one since. My first book though is very personal, it covers everything from my childhood experience, the surgery and depression, (which I have to say I pulled through with flying colors, I help others now, which is also self therapy), sex and seizures is a chapter, but it is not an x-rated chapter; it is one that talks about hormones and meds and relationships and the other chapters are about medications/history of epilepsy/facts and myths. My first book is called If Walls Could Talk: Don’t let epilepsy control you.

It has been almost 11 ½ years now since my surgery and YES I am 100% seizure free, my last seizures were 2 days before my surgery, a long time ago. Some people would think, why are you still talking about it? It's over with, move on, but you know what this is me moving on, helping others is my passion and I know that with my personality, someone who isn’t scared to talk about their experiences that maybe I can help others with their epilepsy.

I have made some amazing accomplishments since my surgery, I even went back to college about 1 ½ yrs after my surgery and took and International Emergency Medical Dispatch Course, just to prove I could do it and I did! I also started volunteering at our Epilepsy Association in Edmonton, Alberta, Canada, just 25 min from where I live in Spruce Grove, I was on sub committees and gradually worked my way up to the Board of Directors where I am proud to say I am on my second term as Vice President. Recently in March 2014, I was also appointed the position of Canadian Epilepsy Alliance Delegate, I was honored and accepted the position with great pride. See I think I am a great example that positive things can come from negative ones, I am referring there to my seizures. It was because of my passion and commitment to the Edmonton Epilepsy Association that I was also asked in 2012 to be an Epilepsy Advocate for Canada. I was ecstatic about this, “me representing Canada”. I am on a team with a handful of others from around Canada who are all epilepsy advocates, we are positive and want to spread awareness.

I have an interview on YouTube that was done when I was attending an E-Action Forum in Toronto, Ontario (that is actually where I was born) and in this short 2 min video, I sum up who I am. You can find me on YouTube by typing in Ann E-Action Leader. I also started an Epilepsy Support Group on Facebook several years ago, it is called “Life after brain surgery – Epilepsy needs to be talked about”. You can tell that helping others is who I am and that is why I do what I do now and that is Public Speaking. To me there is not enough Epilepsy Awareness around the world and I want to change that. My goal is to get out and speak at seminars, conferences and forums, it is great to hear the medical side of things but I truly believe that sometimes hearing it from a patients point of view helps others understand, I know it would had helped me.

Just to show that I am not afraid to take on new challenges, I ran for city council in 2013 where I live in Spruce Grove, Alberta. You know what, I didn’t get in, I was out by 200 + votes but I can say I tried. Speaking alongside others running for council at forums was an amazing experience, seeing my picture on election signs was very rewarding, even my youngest Nathan was proud of mom. My point here is don’t ever be afraid to try something and like they say “you will never know till you try.” I truly believe that since my surgery I am definitely taking on new challenges and fulfilling bucket lists things to, life is all about risks, just take the right ones.

I am 44 years old, mother of three boys (19, 15, and 6) and I am not afraid to get my feet wet or definitely not afraid to step out of the box, I had epilepsy but it never had me!

Epilepsy needs to be talked about, who wants to go first?

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