For readers who are unaware, I suffer from epilepsy and it is no fun. Not at all. In 2013, when all medication options were exhausted, and doctors had decided that it was directly inoperable (the seizures are not caused by anything like a tumour or blood clot on the brain, and my brain looks perfectly healthy), we decided to hunt for new options.
The day after I got home from my operation, I wrote a blog post that for some reason disappeared, and I thought was lost forever. When giving my computer a file detox today, I stumbled across it, so I thought that I would share it with you all. Take note that this was little more than a silly diary entry than it was a technical explanation about the science behind the VNS.
Spoiler alert. I can tell you six years that the VNS treatment did not work for me. There was no change in seizure frequency and severity. I discovered that my VNS wasn’t been good for my voice (I sounded as though I was being lightly strangled every three minutes) and it hurt when turned up to 2mA. It feels like that lump in your throat that you get when watching the incinerator scene is Toy Story 3. It was turned off after about 18 months, and so not to cause any damage to my nerves, will be left in on standby mode, rather than removed.
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.
I hadn’t slept very well the night before. My sleep had been thrown out a lot by illness, and a mixture of relief that this operation was finally happening, and panic as I realised that stupid o’clock was drawing nearer – it was almost time to get up.
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, 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.
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 postponed 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: As of 2020, I 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 11:00AM 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 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. This extended to the point that Nurse Rebecca called her colleague across the room to tell her my age. I guess I should be thankful. I know that everyone is obliged to comfort the patients but it was strange how everyone seemed to be complimentary of my looks, especially considering the floral gown I was wearing. By the way, why do the gowns say ‘hospital use only’. Where else am I going to use 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. I described her Elliot Reid-style appearance to friends (young and blonde… and that’s about it), the fact that she was at my bedside, and the time at which we met. My 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 surgery’ connotes, the experience as of yet, hasn’t been too horrifying.