Many of us have to make many decisions when preparing for a new arrival in the family. Where should our baby sleep? How many size 0 babygrows are too many? Which pram? Thankfully, very few of us have to re-consider whether or not to have brain surgery. Matthew shares his story.
I was diagnosed with epilepsy at 16 (while still at school). My seizures didn’t feel severe. It wasn’t the physical effects of my seizures that caused an issue. It was the number of seizures I was having. On average I’d have five or six seizures every day, each lasting about two minutes. It was inconvenient as I’d lose track of what I was doing. But also, the seizures left me feeling really drained.
Considering brain surgery – are you kidding?
My neuropsychologist told me a few times that I’d probably be suitable for brain surgery. My meds [epilepsy medicines] just didn’t stop my seizures. I was reluctant to even consider it. I had a job and didn’t want, and couldn’t afford, time off. My employers have always been really good and supportive – but still – I didn’t want to take time off. As a result he said to me ‘just give us a nod when you’re ready and we’ll take it from there’.
A couple of years later my son was born and my outlook changed
Like most new dads, I thought about looking after my son. And how I wanted to be able to do everything and go everywhere with him, as he grows. I knew then that I had to do something about my seizures. I just decided to go for it.
Brain surgery is a waiting game
The process [to find out whether brain surgery is a safe and suitable option] takes much longer than you think. I made an appointment with my specialist. He then referred me to another doctor for various tests. These tests were to show the surgeons where the ‘problem’ was. Pinpointing exactly where my seizures happen. They also allowed the surgeons to look at whether part of my brain could be safely removed. And of course to judge the likelihood of success, whether the surgery would lead to fewer seizures.
As the appointment time for my surgery came closer, I found things to help me feel better. My op was at Salford Royal. I normally receive my epilepsy care at Salford. So I knew that the team had done this type of surgery before, on other people. I was also given help to deal with my nerves and anxiety.
My brain surgery operation was in 2011. The surgery went pretty well – but not perfect. They knew which bit of my brain they needed to remove, but weren’t able to remove the whole piece – so a little bit was left behind.
After the surgery
I recovered really quickly. I was told that I’d need about three months off work – but I recovered well enough to return to work after just three weeks. The scars weren’t too bad either. If I kept my hair longer you’d not notice them but I like to keep it shorter. As a result you can notice them – if you look - but they’re really not that bad. (Although when I’m out in a bar with my mates, some people see the scars and presume I’m a bit of a thug). Honestly - they’re not too bad.
So was my surgery a cure?
I knew it wasn’t 100 per cent foolproof [there was a risk the seizures could continue]. But I was seizure free for six months after the surgery! I was amazed, and despite myself, I thought I might be seizure free.
But then I had my first seizure since the surgery. When my seizure came on 16 October 2011- I felt crushed – it was awful. I knew that I wasn’t ‘cured’. This was followed by my first bad seizure in November 2013. Not only did I have a seizure - but my seizure type changed. I smashed my face as I fell to the floor. As a result of this seizure, my specialist readjusted my medication and I’ve not had another seizure yet. [Note from editor – this was Matthew’s first ever tonic-clonic seizure].
Considering brain surgery?
My advice for anyone else preparing for surgery is that you need to be positive. But you can’t go into it thinking it’s a 100 per cent cure – because nothing is 100 per cent. I would definitely advise someone in my situation to consider it.
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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.