I was only seven years old at the time, so I don’t recall things too clearly – everything is rather fuzzy pre-surgery. I started off at a local NHS hospital under a well-regarded consultant. I made a lot of progress there, but my epilepsy was so severe that I was referred to Professor Helen Cross OBE, the leading epilepsy consultant at Great Ormond Street Hospital (GOSH).
Before surgery, I was having lots of tests and visits to GOSH every few weeks, if not days, and this is where I met the most incredible staff and doctors. During this period, I was very subdued and bloated from the steroids and medication I was on. On the day of the surgery, I remember feeling very tired and lethargic as I was still having seizures in my sleep during the night. Because I had very little idea as to what was going on, I was feeling very scared, so I clung to my parents as much as possible. That is the last moment I can recall – the rest is a blur.
A piece of brain tissue the size of a 20 pence piece was removed during the surgery, and that was the moment my life changed. I recall waking up with the most painful headache I had ever experienced, whilst having a huge bandage wrapped around my head. I had roughly 50 electrodes fixed onto a silicone rubber skin that was connected to fibre optics, which was then connected to a computer monitoring my brain activity 24/7. I was like this for the next 3 weeks.
Just 24 hours after the surgery, the doctors and my family had already noticed a significant transformation and said I was like a different child. I was eating, playing, talking and eager to learn and see people. Post-surgery, I had to re-learn basic skills as well as literacy and numeracy, after 6 years of interrupted education.
What does epilepsy research mean to me? If I were to answer that 10 years ago, I would struggle to put it into words, and I still do now! Looking back, as a 19-year-old, it is truly astonishing how technology, medicines and research have progressed in that time, and it’s only going to get better from here. Along with the care I received in GOSH and the skills of the surgeons, I know that it was research that saved me. I am so grateful for the life that research and surgery have given me, and to be celebrating 11 years seizure-free.
-Rachel
https://epilepsy-institute.org.uk/christmas-appeal-21/
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