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(Vagus) Nerve Stimulator

(Vagus) Nerve Stimulator

To stimulate or not to stimulate - that might be the question.

Ten years ago Muir's epilepsy was absolutely out of control. That is when I decided to pursue a Vagal Nerve Stimulator for Muir, acknowledged as a means of controlling seizures in some patients. It was not available in Scotland for children at the time.

I researched the stimulator through the Cyberonics website, the manufacturers of the stimulator. In those days they had a forum and parents and patients communicated with each other about their experiences of epilepsy, seizures and the stimulator. At the time I was convinced that if we wanted it for Muir we would have to go to America. Then his consultant indicated that it might be possible in Scotland provided he could get a second consultant to support his recommendation.

The meeting with another paediatric neurologist for a second opinion was interesting and devastating at the same time. It was clear she didn't favour the VNS due to cost but when I argued that I would rather try the VNS  and turn it off if it didn't work, over a cocktail of potentially damaging drugs, she relented - but not without imparting the devastating news that, in any event,  Muir would not survive his second decade of life.

That consultant will never know what she did to me that day. I had a delayed reaction to her message but when I had the time and the space a few days later to consider her message, my world collapsed. Muir is doing okay these days and if he reaches his 20th birthday (he is 14 years old now) I will tell her myself, in person.

Muir had his VNS implanted in 2002. It lasted eight years before it ceased to function, probably due to a major growth spurt but the stimulator is only expected to last 10 years. Did it have a beneficial effect? Therein lies the question. I suppose for many years we ignored it. We were trying so many different things, including medication that in the end that it is difficult to identify one single effective treatment above all others. That isn't to say that it wasn't working. We always said that whilst it did not stop his seizures, it at least made his recovery easier.

The real evidence of the success of VNS probably wasn't clear until it stopped working, sometime last year. After a long period free of seizures they came back with a vengeance. We learnt later that the VNS had failed but we waited, further to changes to medication but he was still out of control. Together with his now consultant we agreed that a replacement stimulator would be a good idea and so we were wait listed. A replacement stimulator in children is not a routine operation.

The surgery took place in January coinciding with Muir's 14th birthday. The neurological team that operated on him looked like the I team from Greys Anatomy the TV drama. Little did they know the shock they would get when they removed Muir's nine year old VNS for a younger model - it really is a dinosaur by comparison! It is routine surgery ordinarily, unless you are wrestling with a dinosaur as they were. Muir was exhausted and took a while to recover but the surgery has definitely been successful and the stimulator is working up to it's maximum effectiveness, hopefully with a long memory in his vagal nerve.

Do I think it has been beneficial for Muir - most definitely!

Ann

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