'Brain surgery gave me my life back'

An adolescence blighted by life-threatening seizures forced Rachel Hanretty to grow up quickly. So when doctors suggested a drastic cure, she didn't hesitate

Tuesday 08 June 2010 00:00 BST
(Paul Cooper)

When surgery was first mentioned, an operation that would remove part of my brain's right temporal lobe to cure my epilepsy, I wasn't ever terrified. It was more like: "Oh! Someone can cure it?" But I didn't want to get too excited, just in case it didn't work. That was five years ago, when I was nearly 15.

My epilepsy had developed a few years earlier with quite a bang. I was 11 and the first I knew about it was waking up in the Royal Alexandra Hospital in Paisley, confused, in terrible pain and unable to move, because the doctors had given me a lumbar puncture to try to find out what was wrong – as well as CT and MRI scans, and all sorts of other tests through the night. Not that I could remember any of it.

When I opened my eyes, the first thing I did was cry. I'd never been to hospital before. No one could really explain anything to me, because no one knew anything. I thought I had almost died because all I could remember was a very white room and my auntie's voice. Later, I found out I was lucky not to have woken up brain-damaged because the seizure had been so long.

The previous evening I'd gone to bed early but my brother had found me, a few hours later, sitting on the bedroom floor having wet myself – that's what can happen during a seizure – as well as the frothing at the mouth, because it makes your muscles contract and relax. My parents had called an ambulance but it wasn't until the next afternoon that I came round to discover what had happened.

They kept me in hospital for a few days and the MRI scan showed that I had calcification – a white area in the brain which can be an indication of epilepsy, though it isn't concrete proof. Back home, after a few days in hospital, nothing felt certain; I'd had one seizure, but that didn't mean it would happen again.

I was put on epilepsy drugs, and my parents were told how to control a seizure attack, if it did happen again. It involves rectal diazepam: if I had a seizure, I learned, someone would have to insert something into my bottom. We had this big family meeting where my brothers – both teenagers at the time – were told how to administer it, too. They couldn't stop laughing. It was awful.

I guess you could say this was the beginning of me being different; the start of everyone being "a bit concerned about Rachel". The next couple of years were a round of hospital appointments and uncertainty. After a second big seizure, there were more tests and various different medications – I had been getting tingling in my arms, which they hoped the medication would stop – and I had to take my tablets with me everywhere I went, everyone's mums had to know what was wrong with me, and what to do if I had a seizure. There were so many little, everyday things it affected: I wasn't supposed to go swimming in case I drowned; I frequently missed lessons for hospital appointments; and in school plays I'd be waiting in the wings thinking, "Will I have a seizure on stage? Is the play going to be awful because of me?" Or, "If I kiss a boy – will I have a seizure then?" I felt I would never be normal.

And there was bullying. It wasn't about my epilepsy but looking back, I realise that having it had made me grow up fast; I had to be so responsible – and I think I felt above my peer group. They liked to move like a pack, and I was used to looking after myself and when they were falling out over trivial things I couldn't really relate to – I just wanted to learn and I got picked on for that. Eventually, my parents moved me to a new school, a private one that also happened to have a dedicated matron; I was the new girl, the girl with epilepsy. But the night before I was due to start, I had another serious seizure. Again, it was after bedtime, and the sound of my body banging against the floor had woken my parents up. It was while I was back in hospital that I told the doctors about some other symptoms.

Ever since the first seizure I had been having moments during the day when I couldn't speak or move, when I was just in a daze; I'd see faces or objects appear and a tingle would creep up my arms. At first it was just once a day, but by this point it was more like 15. Each one would only last about a minute but the effects were quite enduring. Dipping in and out of states of semi-unconsciousness was hard work and it was tiring – physically and mentally – and I struggled to concentrate in social situations as well as lessons.

"Why didn't you mention this before?" the doctor asked me. I simply hadn't thought it was important. Like most people, I had assumed epilepsy was just when you fell to the ground and shook. My doctor explained this was a different type of seizure called a "petit mal" or "absence seizure". It was a relief to know it had a medical name; I thought I was losing my mind having these "funny episodes", as I called them.

My medication was changed yet again and they did a 24-hour EEG test on me, where I had to walk around with electrodes stuck all over my head looking like something from The Matrix. It monitored my brainwaves so the doctors could find out exactly how many times a day the seizures were happening. It was good to see the results in black and white: I wasn't just trying to get attention – as my mum had joked – it was real.

By this point, exams were starting to loom at school and my absence seizures were making it hard to study. At my next hospital appointment I met Miss Brown, a lovely surgeon. She was the first medical professional who treated me like a grown-up, asking how I felt and really listening to me. I hadn't spoken to any of the other medical professionals about my feelings, only about the physical side. Miss Brown explained that, because I'd tried quite a lot of medications – around six or seven – and none had worked, there was a last resort they could try; an operation to remove the small part of the brain that was causing the problem.

The first thing I said was: "What about my hair?" My mum couldn't believe it, but it felt important to me. But I knew I wanted the operation; anything was better than seizures. The doctors emphasised that the part of brain that would be cut out was on the other side from the bit that controlled language, so the possibility of brain damage seemed to be limited. I was booked in for surgery nearly a year later, a few weeks before my 15th birthday. My mum dealt with it by being very practical and taking me to Marks & Spencer to buy new pyjamas and a wash bag. She must have felt very helpless.

I was totally trusting of the medical team, and it never occurred to me to be scared. Mainly I just didn't want to get too excited – in case it didn't work. It wasn't until the moment they started rolling the bed down to the operating theatre that all emotions let loose and the flood-gates opened.

The operation lasted six hours and I had 39 staples in my head. They were very careful with the scar; it's pretty big but my hair covers it. A week later I was back home and, slowly, life started to get back to normal. We had to wait three months, while they weaned me off the medication, to see if the operation had been a success and if I had any seizures.

There was one, when I collapsed in a PE lesson and got taken away in an ambulance. I cried; after all that effort I was back at hospital. But it turned out to have been a non-epileptic seizure; my brain hadn't healed and my body was trying to stop me over-exerting myself. That was the last seizure I ever had.

Slowly the trips to the hospital and the medication stopped, and people no longer asked "How's Rachel?" Suddenly, I was like any other 15-year-old. I remember filling in a form for a school trip. On the bit that asked, "any medical issues?" I hesitated. Did I? It felt like something that had defined me had been taken away. I had got used to seeing the familiar faces that would appear during my seizures – I'd always see the same man and a woman and in a strange way they had come to be some sort of company. Epilepsy had been my special thing and I felt lost without it. It's awful to admit that, when I had been so lucky, and no one told me it was OK or normal to feel that way.

I started writing down my feelings as catharsis and have turned it into a novel which I hope will get published and raise money to pay for more specialist epilepsy nurses – because epilepsy isn't just a physical thing, you need emotional support too.

Of course, while I miss it in some ways, it's also amazingly liberating. I'm so ambitious now; I'm 20 now and living in Paris for a year as part of my university degree – something I would never have considered before. And I'm allowed to drive. I can do what I like and every day I'm grateful for that, though it does make me hard on myself: why am I not fluent in French yet? Why haven't I made that short film, or started the second novel? I have to stop myself and say, "It's OK Rachel. You achieved a lot when you were 15 – you had major brain surgery. Calm down – there's plenty of time."

Read parts of Rachel's novel at Rachelhanretty.co.uk

Interview by Kate Burt

What is epilepsy?

* Epilepsy is one of the UK's most common brain disorders. Up to one in 100 people have epilepsy and up to five in 100 people suffer a seizure at some point in their lives.

* Epilepsy is often caused by damage occurring to the brain as it develops in the early months of pregnancy. It can also, more rarely, be caused by trauma to the skull, blood clots and haemorrhages in the brain, brain tumours and alcohol abuse.

* The symptoms and severity of epilepsy differ depending on the type of seizure. Tonic clonic seizures are the most common type of seizure, causing muscle stiffness then twitching as well as loss of consciousness.

* Absence seizures, known as "petit mal" (little illness), mainly affect children, causing loss of awareness of surroundings for between five and 20 seconds. Absences can occur several times a day and are caused by bursts of abnormal electrical brain activity. It affects approximately 5000 people in the UK.

* One of the most common methods of treating epilepsy is anti-epileptic drugs (AEDs). There are a range of AEDs, each relating to different types of seizures. They are given either as a single dose or as a combined dose, for more serious types of seizures.

* Surgery is the last resort and is only used if several AEDs have been unsuccessful in reducing or curing the seizures.

* The probability of freedom from seizures following surgery is approximately 70 per cent.

For more information go to Epilepsy.org.uk

Matthew Scott

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