Rachel was 15 when she was got her first seizure. Her arm started twitching frantically; she threw the ice-cream sundae on the floor and stared at it with a blank look on her face. Medical tests following that confirmed that Rachel suffered from epilepsy – a neurological disorder that causes abrupt changes in sensation, behaviour and awareness. Medics started her on various medications, however side effects were proving problematic – some made her lose weight, others resulted in hair loss. Another medicine made her uncontrollably angry and aggressive. For three and half years, all attempts to control her seizures were proving unsuccessful. Rachel was now having nightly seizures up to five times a week, and following each seizure the teenager was left lethargic and exhausted for the greater part of the day that followed.
Rachel’s condition prevented her from carrying out activities often taken for granted by other teenagers – her seizures left her with lack of energy to stay up late, attend parties or sleep over at a friend’s house. She even tried to keep her condition hidden from her friends for two years, not wanting to be treated differently, or pitied upon.
“Psychologically, living with epilepsy is extremely challenging. Especially difficult was trying to keep up at school; it took a lot of effort to stay concentrated in class – medication made me drowsy all the time. There were days when I had to miss school because my seizures were so bad – I wasn’t able to even get myself out of bed. Inevitably, I fell behind in classes due to all the medical appointments I had to attend.”
Despite all the difficulties and hitches she had to face, Rachel pulled through, graduated from high school and is today enrolled in the university course she dreamed of.
“When my neurosurgeon Professor Graeme Jackson told me about this surgery it gave me hope that I could maybe, someday, lead a normal life and live as teenagers my age would. I thought of all the things I can get to experience, what my epilepsy had limited me from.”
Rachel’s seizures were originating from the centre of the brain’s language area, and the surgery posed a very high risk – her speech could have been drastically affected. Moreover, this particular surgery conferred a much greater risk – the danger of having a stroke, or a brain bleed, which meant, leaving the right side of her entire body completely paralyzed. Despite the risks, surgeons offered Rachel a 70% chance of having her seizures significantly reduced or disappearing completely.
Deciding whether to go through with the surgery was no straightforward choice for Rachel. “Choosing to have the surgery has to be the biggest decision that I have ever made, although I don’t regret it. We were told the risks of the surgery numerous times before I chose to go ahead with it and knew very well that it was a risky choice. My parents were especially worried, but at that point, the only option we had was trying to remain positive, keeping in mind what the surgery could offer if all went well.”
Rachel’s mother, Carrol, does admit she had doubts about the surgery. “It was very difficult knowing Rachel wanted to have the surgery – the risks were very high. But ultimately, it was her decision, and I needed to support her entirely. I was extremely distraught throughout the four hours of surgery; I couldn’t stop myself from thinking about all the risks.”
The surgery procedure recommended to Rachel was a world-first. Other epilepsy patients had undergone surgery; however this kind was completely innovative. A brain imaging analysis technique, led by the same Prof. Graeme, provided a further step than an MRI, allowing for more precise brain surgery. This new technique allowed surgeons to discover that Rachel’s epilepsy could only be cured if only a tiny bit of tissue from her brain was removed. “During the surgery, neurosurgeons removed a piece of my brain that was approximately the size of the circumference of a ballpoint pen.” No previous surgery, had removed that little tissue from the brain. The results are yet to be published in a medical journal.
Rachel’s seizures was being caused by an abnormality called Bottom of Sulcus Dysplasia – a malformation in the brain tissue, so small it would have been impossible to pinpoint using a standard technology.
The surgery lasted four hours, after which Rachel was held in Intensive Care overnight, and supervised in hospital for a week after that. Carrol, her mother, was waiting outside the theatre. “It felt like the longest day of my life, I can’t even begin to describe how relieved I felt when I got the surgeon’s call, telling me all went as planned. I had to wait for a further two hours before I got to see her in the ICU. I couldn’t believe how well she was. She has been so brave through all of this. We only told our closest relatives about the surgery, it was too difficult to talk about, and it’s too complex trying to explain what you’re going through.”
“I am so pleased I went ahead with the surgery. I did not want to go through life wondering what if. Whatever comes out of it, at least I know I’ve tried.”
Following the surgery, Rachel has not yet suffered a single seizure – it’s a completely new beginning she is still adjusting to. She is still taking the medication she received prior to surgery, and needs to take it easy for the next 6 months. However, Rachel is already planning out her future optimistically. “Next year I am planning to go to university and study to become a primary school teacher. Hopefully I will be able to learn how to drive a car – that would be such an accomplishment for me.” The 18-year old is also making travelling plans. “I visited Malta with my parents a while ago; it was exciting, getting to know about my heritage. I clearly remember the local festa , and of course, the beaches. I would love to visit again once I have fully recovered.”