Nothing Short of Life-saving
Carolyn Voisey
Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing...
On14th February 2017 the Dude had his vagus nerve stimulator (VNS) implanted. He has since had two battery replacements, each one falling either one or a day before Valentines day. The VNS is considered a palliative care option for treatment of intractable (drug-resistant) epilepsy. In the Dude’s case it has been nothing short of life-saving.
The Dude’s most recent battery change surgery was two weeks back. We can always tell when his VNS battery is running down as seizure activity starts to creep up steadily over a period of weeks. This time surgery was delayed due to a period of poor health before Christmas and if anyone was in any doubt about the benefit of the implant to our boy’s seizure control… lets just say any doubt was removed.
Since December, the Dude has had one of the worst periods for seizures since he was an infant, with skills being lost and near continuous seizure activity.
The situation reached urgent levels when after months of relentless seizures, his brain stopped communicating properly with the muscles of his digestive and urinary systems.
All special needs parents will tell you that we are obsessed with our children’s bowels. It must be more than a little disturbing for any poor, unsuspecting non-SN parents to overhear one of our typical conversations! However, this was the first time since the Dude was breastfed that we became obsessively anxious about how often he was having a wee. Being unable to empty the bladder for an extended period can lead to multiple issues, putting pressure on the kidneys as well as being painful.
Seeing the impact of the seizure burden without his VNS working at its optimum capacity was both sobering and devastating; within 24 hours of surgery it was as if someone had flipped a switch in my boy’s brain, two weeks on his VNS has things back under control. My boy is living proof that you do not need to stop seizures altogether to improve quality of life enormously. Thanks to his VNS he is happy, healthy and enjoying life despite them.
