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tina's story

Tina has right temporal lobe epilepsy. She is married with two daughters and is currently going through tests at Epilepsy Society to see whether she is suitable for epilepsy surgery. She talks about why her family has concerns and why opting for surgery is not an easy decision.

'My husband's father had a brain tumour and underwent surgery as an emergency. It was a matter of life or death for him and there was really no question but to opt for surgery. With epilepsy it is different, I have a choice and I think that makes it much harder.

I have scar tissue on the right side of my brain and still have tonic clonic seizures. I also have spastic quadriparesis which is a weakness in my limbs. Over the years my memory has taken a big hit, both from the seizures and from the medication. The drugs also slow my brain process down so I never feel as though I am living life to my full potential.

'I am in the middle of my life and am potentially contemplating another 20 or 30 years of medication without knowing for sure that they will help me to control my seizures. There are only so many anti-epileptic drugs available to try and then you begin to run out of options. I am also aware that in rare events, people can die from their epilepsy.

Seizure freedom

'I love the idea of being free from my seizures. I am in awe of how the brain surgery team can pinpoint where my seizures are coming from and assess how close this is to important networks for functions such as language, vision and memory. But I also know that there is no guarantee that complete seizure freedom would be the outcome of surgery. Alongside this, I worry that surgery could make my memory worse.

'My husband and daughters are very concerned about me having surgery. They cannot contemplate anything that could risk my memory, speech or vision. They would rather I continued as I am but I haven't made up my mind yet. I am still gathering all the information together and have every faith that together, my family and the neurologist at Epilepsy Society will guide me in the right direction. It is individual for everyone.'

Tina, 2015