CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story Title                                                         

                                                          I Beat Epilepsy!
                                                         Ann Marie Gillie
                                               Spruce Grove, Alberta, Canada

It was 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, the silence around us made it feel like we were the only ones in the building. You could hear a pin drop. He rolled me onto the 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 excited 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 hopefully changing.

Let me rewind here to how and why this was all even taking place for me.

It all started for me in 1972 when I was 3 years old that is when I just 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 had suffered one of the worse seizures, it left my entire 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 never 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 almost a year of having my right side paralyzed I miraculously came through, started getting movement back 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, I was never 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 the seizures decided to come back, but they didn't. I was about 11 years old when I was taken off all meds.

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. 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, effects like 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 that brick wall again and again.

In 1994 I had my first son, Mathew, who is now 20. My pregnancy actually went very well, and yes I stayed on all my meds through the whole thing that is one question that allot of people ask me about my pregnancy. The amazing part was that I didn't have single seizure during the pregnancy. 

Shortly after Mathew was born, the seizures returned AGAIN but I never let them interfere with what I liked to do. I continued playing soccer, even went to boxing (just recreational) and was heavily involved on boards and committees in my community.  Time went by, seizures came and went and meds were changed a few times. Then I made a decision, a decision that changed my life!

I asked the physician I was working with, Dr. Jeffery Moss, what he thought about me going to see a new neurologist, to get a second opinion. Well Dr. Moss referred me to see a new Neurologist, I was so excited. The first meeting 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". 

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

Shortly after my week of testing I was brought back into the hospital to meet with the neuro surgeon. He came right out and said "Ann you qualify for surgery". 

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.  It wasn't till the next day (after surgery) 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 had 50 staples in my head. The actually surgery was called Left Selective Amygdalohippocampectomy, including the preparation, surgery, and intensive care afterwards, it was about 8 hrs.
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. I stayed in the hospital for 6 days, what surprised me the most was that I forgot how to walk. I  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 I had a magic wand, I was back walking again. 
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. 
It has been 12 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 for me, 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 was 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 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.

I am 45 years old, mother of three boys (20, 16, and 7) 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? I do!

Ann Marie Gillie

Both of my books are available on line - Amazon, Barnes & Noble

CURE epilepsy

Ann Marie Gillie
I Beat Epilepsy