Nick gets a vagus nerve stimulator (VNS)

Once upon a time, in May 2013, I wrote an entertaining post here about my experience, described here. However, after a few friends saw it, it vanished. Great. Thanks WordPress. I remembered less now about the experience, so I was happy to find the old draft.

This is an diary entry written a few hours after I came home from the neurology ward, after going under the knife, and surgeons picked at my nerves to try and cure my epilepsy.

Right now, I look as though somebody has slashed with a knife. And that’s because they have. Surgeons have a habit of doing that.

As impressive as the scar is, I'm distracted by desperate need for a haircut.
As impressive as the scar is, I’m distracted by desperate need for a haircut.

I hadn’t slept very well the night before. My sleep had been thrown out a lot by epileptic seizures, and a mixture of relief that this operation was finally happening and panic as I realised that stupid o’clock was drawing nearer, and it was almost time to get up. I read the good luck messages on my Facebook wall, a large chunk of which featured the word ‘cyborg’ or android. (“Good luck man! You’re basically gonna be a cyborg! You should ask them to install wifi or something while they tinker around!”. Thanks Daniel.)

One 6:00AM shower with the strawberry sauce-like pre-operation scrub I had been given and it was time to go. Normally bathroom fluids might advise you to avoid contact with eyes, but as it is the universal anti-bacterial fluid used around the hospital, bizarrely it stated that I should avoid contact with my brain. Phew, it’s lucky I read the bottle…

At the hospital, clothed in a ridiculous floral hospital gown and tights, I waited for news on my operation. I looked around and noticed that the majority of the advice signs around the room were written in Comic Sans, which was a rather interesting choice outside of the children’s ward. You see, neurosurgery isn’t really a barrel of laughs.

Today, I was here to get a vagus nerve stimulator, or VNS.

So first of all, what is a VNS? It is a small disc, similar to a pacemaker, placed under the skin. At regular intervals, it sends an electric pulse to the vagus nerve, and subsequently, the brain. It’s even altered with a remote control. I’m not sure how it works, and I’m not convinced that the doctors know either. I would get an incision by my shoulder for the stimulator, a wire fed up over my collar bone, and another incision for the surgeons to attach the other end to my left vagus nerve. It’s just as well that they remembered which one. If they chose the nerve on the right, I’d be a bit dead. Thanks Wikipedia.


And so I waited and waited a bit more for attention, which I eventually received from the surgeon’s assistant today. Having laughed at how I looked 15, and that there is no way that I could be 22 (this happened more than once), the assistant to the surgeon seemed unusually chirpy as he listed the risks of the surgery such as hoarseness, numbness, paresthesia (‘pins and needles’), and less serious things like, you know, sudden death.

As my operation had been cancelled already several weeks ago, I seem to have been brought forward on the waiting list. A doctor talked me though the procedure, but not before asking me whether I knew what the VNS did. Unfortunately, amidst tiredness and laziness with research, I had little expertise beyond it being a ‘brain zapper’ (NOTE: Almost a year on, myself and friends still call it that.)

“Erm… well, ‘zap’ can be a medical term…”

I hope that’s true. Anyway, I signed something that entitled the surgeons to take any measures possible to save my life. Basically, it meant that no one would be in any legal trouble were I to wake up from my operation with body parts missing. Not really a problem, I guess. It’s not like I use my brain much anyway.

I was wheeled away at 11AM to receive the anaesthetic. I have no recollection of losing consciousness after the injection. I was just being spoken to about the procedure, and the next thing I know, it’s two hours later. I can recall asking whether what I was about to be injected with was the substance that would knock me out. She said ‘no’. She lied.

I woke up to the sound of a nurse reciting questions to test my consciousness. For example, who the current Prime Minister is, but I don’t know whether I answered correctly. I wish I was conscious enough to go off on a political rant just to see their faces, but no. I could barely even see anyway. The lead surgeon then interrupted to tell me that “the operation was a complete success”, but as he sounded blurred enough that he could have been in another room, I couldn’t reply.

It was bad news for the rest of the day though. I was given oxygen, which was nice, if only for how weird it felt – as though something cold was being sprayed into the back of my throat. Not long after that was switched off, I had a seizure, but disappointingly, I didn’t get the oxygen back. No fair. I had been told that the procedure was minimal enough that it was possible that I could go home without staying the night. They then changed their minds. It was just as well that the bed was relatively comfortable.

There was another humourous moment as several nurses on their afternoon shift, also couldn’t believe that I was 22, or that I was six feet tall. Nurse Rebecca put it most bluntly: “Wow. You’re tall.” I guess I should be thankful. Everyone was bizarrely complimentary of my looks considering the floral gown I was wearing. (Quick thought: Why do they have labels specifying ‘hospital use only’? Where else am I going to wear it?)

As my sleep was thrown out of any pattern, I didn’t sleep until about 3AM, and so I got to speak to the nocturnal nurses, and very friendly they were too. Nurse Jo nicknamed me the ‘Night Owl’ as I read a copy of NME. When I described her Elliot Reid-style appearance (young and blonde), the fact that she was at my bedside, and the time at which we met, and friends had a whale of a time, filthily suggesting that I ‘missed out’(“Was there a curtain? Yes? Aww, you really missed out”). I won’t delve into the other lexicon that they used. Naughty naughty.

Nurse Tori wouldn’t stop singing as we discussed our favourite bands (if I remember correctly, she took a liking to Britpop, and we shared a lot of tastes). Interestingly, she was a great singer. It’s a shame that this was at 2AM, as she had to keep her voice down.

Now, I am home. My sister is creeped out by the fact that the other incision is held shut with staples. I can’t move my neck to the left, because it really damn hurts. However, considering what the term ‘brain surgury’ connotes, the experience as of yet, hasn’t been too horrifying.

Less than two weeks later, I went to Download Festival. Some people called me brave and devoted. Mum and Dad on the other hand were pissed off to say the least. 

Since then, we’ve discovered that my VNS hasn’t been good for my voice (I sound as though I am being lightly strangled every three minutes) and it hurts when turned up to 2mA. It feels like that lump in your throat that you get when watching Andy donate his toys in Toy Story 3. Oh, and I am convinced that it hasn’t helped one bit. At least that means that it might be switched off in the near future.


3 thoughts on “Nick gets a vagus nerve stimulator (VNS)

Add yours

  1. Wow what an experience! Really interesting read. You mention at the end that it hasn’t helped — have you tried the ketogenic diet or the Gut and Psychology Syndrome diet?

    1. Not as of yet, and if I do so, it won’t be for a while. For the time being, there are already two variables to keep track of: the VNS and a new drug (perampanel). What’s doing good? What’s doing bad? We’re never quite sure, but for the time being, I won’t be trying a third treatment simultaneously!

    2. Also as for the VNS not helping, as of yet, it’s slightly unsure. The problem is, people have different threshold over how much power their body can tolerate. Mine is 2 milliamps. For ll we know, anything higher might help, but we will never know, because I can’t go any higher! It could be like a helpful drug with intolerable side effects.

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