Hannah is 37 and was diagnosed with epilepsy at the age of six, experiencing tonic-clonic seizures. She tried a number of AEDs before having a vagus nerve stimulation (VNS) implant thirty years later, in January 2014.
Hannah says she wishes she’d had the VNS implant years ago, when she was younger. She feels like her epilepsy led to her missing out on a lot of experiences. After her ninth or tenth anti-epileptic drug, her healthcare professionals couldn’t offer her anything new and she became very frustrated with the situation. She told her epilepsy specialist nurse that if there was nothing else, she would stop taking her medication altogether.
Hannah was referred for investigations and found to be suitable for VNS, but had to wait for three years before the operation was carried out. Hannah says that the treatment was delayed due to a lack of funding. She eventually had her surgery in Birmingham and says she had brilliant aftercare, but did struggle with the VNS to start with.
“After the operation, I had a very sore throat and just wanted soup, yoghurt and food that was easy to swallow. Two weeks after the operation, the VNS was switched on. To start with, I struggled with the 'on' time but gradually I got used to it.”
The VNS implant has resulted in a huge improvement in Hannah’s seizures. It is such an improvement that Hannah is just about to go on her first holiday alone, as she feels so much more confident about her seizure control.
Hannah said her treatment hasn’t been a trouble-free ride. She says:
“Sometimes, when it has been adjusted by the epilepsy specialist nurse, it feels as if I have been kicked in the chest by a donkey. On the day when I have been 'topped up', I have to take it easy but the next day I keep busy.
“My advice to anybody who might be considering having it done is - go for it! When you manage to have a week of no seizures, it is like winning the lottery.”
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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.