Sophie's epilepsy surgery story - Epilepsy Queensland - share your story

Sophie's Epilepsy Surgery Story

At the start of 2019, Sophie (pictured above with her sister) had her first tonic-clonic seizure during the night after a long period of emotional stress. After immediately seeking medical assistance from a GP, Sophie was referred to a general neurologist. After further investigations by this neurologist, she learnt that the “panic attacks” she had been experiencing for 4 years was not anxiety-related, but focal seizures. Sophie trialled many anti-epileptic medications, however, they provided no relief to these seizures.

A Big Adjustment

Before her diagnosis, Sophie’s days used to involve attending university and being extremely active. She loved to swim, run, and to go to the gym, however, it was discovered over time that physical activity was a seizure trigger. As her fatigue levels increased, Sophie learned to adjust her lifestyle and found new indoor hobbies, such as playing guitar, light gardening, and teaching her beautiful Border Collie lots of tricks!


Overcoming Obstacles

Sophie found she was still able to work, and managed the commute assisted by her partner. However, when he was deployed overseas as a member of the ADF, Sophie reduced her working hours to part-time to ensure her health and life balance was maintained. Sophie also faced challenges such as increased fatigue and stress, which intensified her seizure activity and frequency, meaning working part-time was a better option.

Sophie says:  “The process of accepting your new abilities in what is achievable is a very hard process, not only for yourself but your significant other, friends and family. I had to learn I was unable to perform as much physical activity. As a couple, my partner and I were unable to attend some events or we could only go for a short time, for example, events with large groups of people, loud music, cinemas, and some bars or restaurants.”

She continues:

“Finding new things to do can be very difficult but working through it is very important to maintain meaningful relationships in your life, and finding special things to do together. I have found my memory was affected and I would become very frustrated. With acceptance of the condition and putting in place strategies to help with memory (post-it notes are your friend!) life became a lot easier. I also found the loss of my license and the timeframe coinciding with the time of my partner’s deployment was difficult, however, our modern age has many options to get around this! Home delivery is the BEST!”

Surgery the Best Option

Sophie was referred further to a specialist epilepsy clinic at the Mater Hospital in Brisbane. Here she learned that she had dysfunction in the right temporal lobe causing her seizures, however, it was unknown exactly what type of abnormal tissue was in this area.

Consultations with Sophie’s neurologist and neurosurgeon decided the best treatment was to remove the right temporal lobe as unfortunately, the affected tissue would continue to branch out if left untreated and therefore would affect more areas of her brain. 

Sophie says: “Once the decision was made that surgery was the best option, I was thrilled to finally have a plan moving forward. However, complications with the COVID -19 pandemic meant there were alterations of dates. This was very difficult to emotionally work through as surgery was the “light at the end of the tunnel” to hopefully overcome the seizures.”

Throughout this time, Sophie maintained very close contact with the hospital and was provided with a surgery date – early June this year (2020). She says she was so relieved, happy, and nervous, and waking up from surgery was the best day she has ever experienced.

Looking to the Future

Now post-surgery and recovering well, Sophie, an Accredited Exercise Physiologist, hopes to continue to study and specialise in neurological rehabilitation. She believes her experience could provide her with a greater knowledge base and relatability to clients in order to provide a better service.

When asked what message she would like people to know, Sophie responds: “BRAIN SURGERY IS NOT AS BAD AS WHAT I THOUGHT IT WOULD BE!!” She cautions against using Doctor Google, finding Googling things to be unhelpful. She emphasises that whilst the experience was a difficult one at times, having an amazing medical team and family to support her through her journey has made it all achievable. Sophie relays that she is happy to answer any questions that people may have relating to epilepsy surgery. (Please send us a message at Epilepsy Queensland and we will forward it to Sophie.)

Amazing cake below is from Sophie’s work colleagues.

Sophie says: “You can absolutely do ANYTHING you put your mind to, if you’re faced with a similar hurdle, you can absolutely do it. It’s often easier said than done, however, try to keep your focus on every little achievement you make during your recovery because it will mean the most!”

It is predicted that Sophie will be seizure-free in about 2 years providing everything continues to heal well. Sophie says currently her days are probably similar to those who are also isolating at home, with lots of indoor activities. 

Thanks for sharing your epilepsy story and surgery experience with us Sophie ?

Epilepsy Queensland