Sophie Jodouin - Seizure free thanks to surgery

Using deep electrode implantation and thermocoagulation, doctors were able to identify the source of Sophie’s seizures and stop them

I was a young teenager and in perfect health, when suddenly I started having absence seizures at school. However, undiagnosed as such, I would often tell my mother how I got lost in the classroom or even in my room.

On Christmas Eve of 1997 I woke up to find two paramedics standing over me. My body felt like it had been through a massive marathon. I was rushed to the hospital not once but twice that day.  I had experienced two tonic-clonic seizures. It was official: I was diagnosed as being epileptic. Throughout the years, my epilepsy and seizures were never easy to control, and my neurologists in Ottawa were baffled by the reason behind the seizures.

Four years ago, after a burnout from stress and being over tired at work, I seized non-stop for 140 hours and since then my life has never been the same. I was released from the hospital but started having seizures on the left side of my body three to four times a night and they were never able to stop or control them. My neurologist referred me to The Neuro.

Last year, in May, I was invited to take part in two weeks of EEG monitoring at The Neuro in the hopes of finding some answers. This was a chance of a lifetime! I met Dr. Martin Veilleux who was, at the time, the neurologist on staff on 3 North.

All the amazing nurses and staff cared for me very well. They provided support and knew exactly how to care for the special needs of each patient. It is a one-of-a-kind place, and I felt very lucky to be there. During my stay, I had the pleasure of meeting who I consider the Dream Team: Dr. Andrea Bernasconi and Dr. Neda Ladbon-Bernasconi, who were able to find the cause of my seizures through an MRI where they reconstructed my brain layer by layer, in 3D.  They discovered a lesion that I have had since birth. This was the moment that changed everything.

Later on in October I had an appointment where I met Dr. Jeffery Hall and a couple of residents from out of the country. The plan was to have a surgery called deep electrode implantation. This is a procedure where they put electrodes directly on your brain to get more precise information to help target the cause or location of the seizures. I wasn’t nervous and I was more than ready.

There is a special something about Dr. Hall that puts you at ease, and having been there before, I knew I was in great hands. This was the right choice for me.

A year after I first walked into The Neuro I went in for my surgery, excited and ready for more answers. The team was amazing! Dr. Hall knew precisely where to put the electrodes to get the best results as the doctors had carefully mapped out my surgery beforehand.

If there is one thing I’ve learned about my visits and stays at The Neuro, it is that everything is done as a team and cases are never looked at by one independent doctor. As a patient there, I was privileged to have numerous doctors examine the results of my tests and talk about them collaboratively. The solution was found because of their teamwork and their combined skills.

After implantation I had the pleasure of being a patient of Dr. Birgit Frauscher’s. I have met many neurologists on this journey, but none as enthusiastic about their job or results as Dr. Frauscher.  She is one of a kind and has been a gem throughout this process. Her passion for her work and her drive for success is exemplary and being under her care, I knew I was going to get the right results.

On May 16, I went for a second surgery called thermocoagulation. This is the process of putting electrodes directly in my lesion and burning it. What a fantastic experience and one I will never forget. Since the procedure I have been seizure free and I truly feel I won the lottery.

I will go back for a follow-up with Dr. Hall and Dr. Frauscher to ensure everything is going as expected. I cannot thank these doctors enough for their determination, expertise and their compassion. They gave me the best gift of all, they gave me my life back after 21 years.  

This was a long journey for me but it ended well. I’d also like to thank all the staff of 3 North, the staff down at EEG, Lorraine and Nicole, Chun Ip, Nathalie Cloutier-Fons, the many volunteers,  and all the other doctors and residents who worked on my case.

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The Neuro is a McGill research and teaching institute; delivering the highest quality patient care, as part of the Neuroscience Mission of the McGill University Health Centre. We are proud to be a Killam Institution, supported by the Killam Trusts.