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I’m achieving so many firsts – Torie's journey

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Torie, 33, was diagnosed with left temporal lobe epilepsy at the age of 10. Her frequent seizures had a real impact on her quality of life.


My parents didn’t notice my behaviour was different to any other child until I was about 10. I remember having ‘funny feelings’ from the age of about six, but my parents hadn’t noticed. It turns out these were absence seizures.

The older I got the more severe my epilepsy became. The fact that my drugs [epilepsy medicine] had never controlled my seizures was becoming a real issue.

During my 20s I started to have generalised tonic-clonic seizures, while also continuing to have absences. My seizures were very unpredictable. In my late 20s/early 30s I could have six or seven a month or absolutely none at all.

Enough was enough!

The impact of the seizures was doing my head in (excuse the pun). During these newer seizures [tonic-clonic seizures] I could stop breathing. I was also injured a few times or found myself in dangerous situations.  I fell on a railway line. I smashed my collarbone. Quite honestly the epilepsy was taking over my life and certainly contributed to me developing depression. I felt that life wasn’t worth living. I was in full time work, I lived independently but I was constantly exhausted and wanted more out of life. And seizure freedom was desperately needed. 

I told all of this to my neurologist. I’d tried so many epilepsy medicines that had not controlled my epilepsy.  So he brought up the option of brain surgery. 

Although nervous, I was very excited before my operation – a temporal lobe resection [in 2013]. In fact I even took pictures of my shaved head and shared this with my friends on Facebook! This was my way of coping, but my mates were more nervous than I was!

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Not quite straight forward, but no regrets

I ended up having one major operation, then two to stop a cerebrospinal fluid leak [this is when the fluid surrounding the brain and spinal cord leaks.] However, I was back home after one and a half weeks. 

Today I still take all my anticonvulsants [epilepsy medicines] and I haven’t had one seizure since the operation! I have had a few auras – but I’m absolutely fine with that. 

After the age of 14, I couldn’t ride my bike, after an absence seizure left me lying in the road. But I’ve recently started riding again. I want to go sky diving again too! These are things I didn’t dare consider prior to the operation.

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What I know now – but wish I’d known before

Surgery was definitely the right option for me. I wish that I’d had it sooner! It was a very emotional time and is still in some ways – a bit like starting your life again. It has been so important to have emotional support.

People who are considering surgery must be aware of all the risks, including the risk that they might experience depression after the operation. I learnt that it would have been ideal to have someone – a nurse – there to help me in the house during the first week after my operation. You must also take those painkillers (you will need them!)

What I could do for the first few weeks was limited. I’d say just give yourself time and don’t put yourself under too much pressure to do everything until you’re ready. 

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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.

Event Date: 
Thursday 19 June 2014 - 11:59

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Comments

Hi i am so glad everything went well, i had the operation 3 years ago and agree with everything you say in your advise to others,

Submitted by michelle chesters on