My VNS Journey So Far…

Two weeks ago today I returned home after receiving my VNS Surgery. Describing these past 14 days as a rollercoaster would be an inadequate understatement.

I only received the date five days before the operation took place. Very little information was given to me, meaning a large pile of anxiety and stress was left brewing inside of me for all of that time. Considering this is an epilepsy treatment and epilepsy and ASD so often come hand-in-hand, I do feel the staff at the National Hospital for Neurology and Neurosurgery should have been better prepared to deal with an atypical patient but they weren’t.

The actual surgery went smoothly but the before and after not so much so. Beforehand, I was left hangry and dehydrated, waiting in a small room for most of the day. And after, I was ‘forced’ to stay on ward, in a bed that wasn’t mine, surrounded by people I don’t know. Luckily I was doped up enough that this didn’t bother me too much in the end, despite the fuss I made beforehand (I refused to pack an overnight bag, meaning my parents had to rush around town looking for pjs etc.).

The nurse changed my dressings for me on ward to the waterproof ones, however, they only had dressings that were either too large or too small for my wounds. This meant they overlapped each other and whenever I moved I could feel my skin being tugged. This is something most people wouldn’t find distressing, but as someone with over-sensitive touch I could not cope. My mum and I changed one dressing the next day at home, using two small ones to cover the wound instead of one large. This drastically helped with my physical issues but triggered more anxiety as we’d been given very little information (yet again) about the actual wounds and how to deal with them.

Then came the worst. I spent most of Thursday to Monday in full-blown meltdown mode. This is what happens when everything simply gets too much for someone with ASD. The analogy most commonly used is a water-jug that is nearly full and then with a tiny drop overflows, drastically. I essentially lose all control of my behaviour and thoughts. I become aggressive towards myself and others and develop strong suicidal thoughts. Of course this had a huge effect on all my family and lead to some rifts. However, after a visit to the GP my dad and I realised it was caused not just by the stress induced on me by my surgery but also the fact, that at the time, I was taking pretty much no anti-depressants at all. Since increasing my dose last week we’ve already noticed a huge difference and all has been forgiven. These meltdowns were far more common a few years ago, taking place weekly when I first started university. So I’m clinging on to the fact that this is probably the first I’ve had all year and doing all I can to learn from it.

If physical irritation, severe-depression and surgery pain wasn’t enough, I also returned home with what I’m calling Hospital Flu. This horrible cold then lead to my gums becoming inflamed giving me horrific toothache.

Two weeks on from surgery, my dressings are off and I’m feeling 90% normal me again. Everything is beginning to look bright. As difficult as this journey has been so far, I’m hoping it’ll be worth it.

VNS is basically a seizure pace-maker. A stimulator is placed just below the skin in your chest which then sends mild electrical signals up through a wire attached to the Vagal Nerve on the left side of one’s neck. These stimulations help calm the irregular electrical activity in the brain and can be boosted when a seizure occurs. There is a 2 in 3 chance that this’ll reduce the severity and/or frequency of my seizures. It is those stats that I’m currently clinging on to. These two weeks of anxiety and discomfort could give me a chance at a fully independent life, something I’d almost given up on at the start of this year.

My stimulator will be switched on on 28th October at its lowest possible setting automatically increasing every two weeks until it reaches the ‘comfortable’ rate. From the moment it is switched on it can be boosted, so although I hope we won’t need to test it (my meds seems to be doing well at the moment), we should be able to see whether it works or not pretty soon.

I could go into far more detail on all aspects of this experience, and may do so in other blogs, however, this has already gone way beyond my normal blog length. If you know anyone potentially facing VNS please share this to them as just a little first hand knowledge can go a long way.

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