I was determined not to give up on finding a better treatment.
Lisa was diagnosed with epilepsy at the age of seven. Her seizure types include complex partial, atonic, tonic-clonic and absence seizures. In 2013 Lisa became the third person in the UK to receive deep brain stimulation (DBS) to treat epilepsy.
My seizures have always been frequent and unpredictable. In a seven-day period, I’d have seizures on at least five days. Some days I might have a couple of seizures. Other days I might have several seizures every few minutes, or a prolonged seizure. My husband Paul has given me diazepam countless times [an epilepsy medicine used in an emergency]. I’m also at a higher risk of SUDEP, which Paul and I talk openly about. [Sudden Unexpected death in epilepsy (SUDEP) – to find out more about the risk of SUDEP and for support call the Epilepsy Helpline on Freephone 0808 800 5050]
My seizures are so exhausting that sometimes I’m too poorly to get out of bed for a few days. Over the years, I’ve had periods of depression – I think this was probably due to my medicines, my seizures and my frustration.
Willing to try anything my doctors recommended, I’ve tried every dose, type and combination of epilepsy medicine. Some made no difference at all to my seizure frequency, some made me feel drowsy and others drastically changed my personality. None gave me seizure freedom.
Don’t give up
On my 21st birthday (1993) I had brain surgery to remove scar tissue from my brain. Unfortunately, due to the risk posed to my communication skills, the surgeons were unable to go deep enough to remove all of the scar tissue [causing my seizures].
The next glimmer of hope was in 2003 when I was reassessed for brain surgery but the results confirmed that surgery wasn’t an option this time. Eventually I had an operation in 2005 to implant a vagus nerve stimulation (VNS) device. Unfortunately VNS didn’t help me and I was devastated when my doctor told me that there wasn’t anything else left to try.
In 2011, I was referred to The Walton Centre [a specialist neurology centre in Liverpool]. My new specialist told me that a very new treatment - deep brain stimulation (DBS) - might help me.
In 2013, I went to hospital to receive my DBS device. This involved two operations and an 18-day stay in hospital. In the first operation the surgeons implanted two electrodes in my brain. Three days later, surgeons implanted a battery in my chest and connected it to the electrodes.
My life with DBS
I have a scar and I temporarily lost my hair – but none of that bothers me.
The medical team will continue to monitor my progress over the next couple of years. I’ve had five hours of tests recently, which showed that my cognitive [thinking] and communication skills have improved. I’ve also received support to effectively manage my DBS device by ensuring that the system is switched on and recharged. However my neurosurgeon controls the setting of its strength and pulse rate, and at my next appointment my neurosurgeon plans to further increase the strength of the stimulation.
I still have seizures, but they are less frequent. Sometimes I can go three or four days without a seizure. I’ve also noticed that I recover more quickly after a seizure and I haven’t had any cluster seizures.
The largest improvement is in my quality of life. My language and memory skills have improved. I can think more clearly and feel emotionally stronger. People comment that I’m now brighter and much happier - I’m more positive about our future.
Appearing on TV
I’m glad that I took the opportunity to share my experience (through my appearance on the Channel 5 programme Brain Hospital: Saving Lives and this magazine). Paul and I want to make sure that other families like ours, who could benefit from treatments such as DBS, have access to them.
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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.