Scott was diagnosed with epilepsy at the age of seven. Unfortunately epilepsy medicines were unable to control his seizures. In any three-month period, Scott would have 20 to 30 tonic-clonic seizures and many more absence seizures.
I was excited about the prospect of having brain surgery to control my epilepsy. There was an opportunity that I might finally be free of my seizures. Friends couldn’t believe that I was excited about having my ‘head cut open’, rather than scared.
I’m a cub scout leader and run a local pack. I’ve always been very open with the cubs about my epilepsy. Occasionally I’d run first aid drills, to make sure that the cubs knew what to do if I had a seizure while I was with them. I also reassured them about my impending surgery.
What the doctors saw
On 20 February 2012 I went into hospital. This allowed my neurologist and surgeons to complete various assessments to pinpoint exactly where my seizures were coming from. These initial assessments suggested that epileptic activity was happening mainly in my right temporal lobe, with some activity in my left temporal lobe.
Two days later, I had an operation to implant two electrodes into my brain. The electrodes were about two inches long - so were implanted pretty deep! I was then ‘connected’ to a computer, which monitored and recorded all the epileptic activity that happened over the next few days.
During this period I had a few seizures. These were unpleasant, but instead of being upset, I was pleased that the medical team could now gather the information they needed.
Obviously being in hospital I had doctors, nurses and neurologists in and out all the time. On the sixth day, one of them came to tell me they were finding exactly what they were looking for. But, I was told they actually wanted me to have more seizures to collect more information!
Not quite the results I expected
My neurologist went through the results of my assessments. I expected to be told where in my brain my seizure activity was happening. I expected to be told what my operation would involve. I didn’t expect to be told that I needed a pacemaker!
My neurologist told me that my heart showed signs of distress during my seizures. He referred me to a cardiac (heart) doctor who arrange for me to have a pacemaker fitted. This decision probably saved my life.
No time to ponder my surgery
As part of the next testing phase, I had to be monitored and assessed while I wasn’t taking any epilepsy medicines and had been deprived of sleep.
Unfortunately, after a couple of weeks of testing in this way, I went into status epilepticus. [Status epilepticus is a medical emergency because the longer a seizure lasts, the less likely it is to stop on its own. It’s also less likely to stop with emergency medicines. Status epilepticus can lead to brain damage, or even death.]
The medical team could not stop my status seizures and I was rushed to intensive care. There, the medical team put me into a medically induced coma. This stopped the seizure, but each time the doctors tried to bring me around from the coma, I started seizing again.
My surgeons and medical team decided that the best course of action was to operate immediately. I was then taken into theatre for epilepsy brain surgery. The team knew that surgery wouldn’t be a cure for my epilepsy – but it would reduce my seizure frequency and severity.
After my surgery
I recovered in hospital for three months. This was followed by another two months of recovery at home, before I could start my normal routines again. Thankfully the support of my parents, friends and church kept me going and helped me remain positive.
Since my brain surgery I’m still taking my epilepsy medicines. The good news is that I’ve only had six seizures in the last two years and my life now is far better than before. I had a tough time but the surgery was more than worth it.
To anyone who is considering having the surgery I would really encourage you to find out more. If you’re suitable, then just go for it! I appear better, I feel better and my friends and family have told me they have noticed a significant difference in my health, outlook and quality of life.
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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.