Gillian didn’t realise the impact that her daily absences had on her life – until she was seizure free. Gillian talked to Morgan Mitchell about her brain surgery and why it’s important to Seize Control.
My last seizure was in 1992. I was 38 and I’d been having seizures since I was born. That’s 38 years of having daily absences, more than 13,900 seizures in total.
I was born with epilepsy, and on a daily basis I experienced a number of absence seizures. I often managed to cover up many of these absences as a pause in conversation.
The event that spurred me on to find out about other treatments
One night I was supposed to meet my friends. When I didn’t show up, my friend became concerned and called the police. The police broke into my house and found me lying on the floor. I’d had a seizure, and been lying unconscious on the floor for three days.
I decided that it was time to find an alternative treatment for my epilepsy. I asked my doctor for a referral to an epilepsy specialist, so that I could discuss other treatments.
The specialist gave me two options. I could either try a different epilepsy medicine, or go down the surgical route. My current medicines made me feel sleepy, and badly affected my awareness. So I chose to explore whether surgery was an option.
Eventually, I was told that the surgeons would remove the part of my brain that was responsible for my seizures. I was also told that there was a small but real risk that I could lose part of my vision. Having brain surgery is scary, but the risk to my sight added more worry and I was nervous.
Preparing for surgery
In preparation for surgery, they carefully reduced the dose of my epilepsy medicines and I had an IQ test. I always believed that I was less intelligent than my friends and I thought I couldn’t get a ‘proper’ job because of my epilepsy.
But I was pleasantly surprised. The IQ tests revealed that I have above average intelligence. I think that my ability to perform and concentrate was effected by the combination of epilepsy medicines that I took.
I also had a CT scan [the full name of a CT scan is computerised (axial) tomography scan]. The results showed that there was a calcium clot in my left temporal lobe. And this clot was the cause of my seizures.
My life after surgery
I was in surgery for seven hours. They cut from the front of my head, to the back of my ear. In an attempt to cover the healing incision [scar] I would wear thick Alice bands. I still associate Alice bands with my surgery. Whenever I see someone wearing one, it makes me cringe!
Once I had successfully recovered from my surgery, my doctors started to take me off my epilepsy medicines. I was told to start halving my pills, and then quartering them, until eventually I would stop taking them completely. I wanted to speed up the process but my doctors warned me that this could cause a seizure.
So I carefully followed the advice and slowly came off all of my epilepsy medicines. Since the surgery in 1992, I have been completely seizure free.
I was really, really lucky, if you’re suitable, I would recommend it. It freed me. Now I’m not on any medication. I wish I had done it years ago, it’s been a cure for me.
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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.