Of course, the thing you're all wondering is "what is it like to have brain surgery?" It's a hard question to answer. Let me give you a bit of context. We're late in '88 and I've just seen a cute advert for a new toy, something that sounded like Cabbage Patch Kids, but I seem to think were some kind of appealing, yet plastic looking caterpillars... I went to tell my brother that I'd seen them and that our sister might like one for Christmas.
I think I had caught him emerging from the bathroom, about to go onto his top bunk to do some reading. Then I realised I couldn't pronounce the name of the toy (let's say Cabbage Patch Kids, for the sake of argument). It kept coming out as a sequence of syllables that rhymed (approximately) but the consonants were all wrong. tabakap tabakap and I'd keep giving up, alarmed, unable to pronounce it.
I'd been revising for mock exams all day, and was doing my last minute memorisation routine, so I stopped trying and just concentrated on revising for one of the most important exams of my life up to that point.
It was a humanities subject that I wasn't too keen on, maybe history or geography... I'm thinking... geography. History was a subject I would have done crap on anyway because during a hypoglycaemic reaction on my way home one lunch time, I'd actually thrown my hand written school exercise and class note books away in a fit of frustration and discombobulation. Anyway, the next morning, things seemed OK-ish, at first. I had a few problems pronouncing the occasional word, but no big problem, I was getting by... to a certain extent.
We walked into school, I was still trying to memorise and remember my revision notes as we walked. I got into the exam. And that's when it all came to pieces.
I couldn't write. I was so panicked by this, that I couldn't even begin to answer the exam. There was something wrong with my brain when it came to words. I couldn't pronounce them. I couldn't put the pieces together properly. I would learn years later that these pieces are called morphemes and phonemes. They were a mess in my mind. Well, they weren't. The little pieces were OK, it was my ability to sequence them properly that seemed to have to gone to pot.
I put my hand up to say that I had a problem. What did I say exactly? I can't remember. Why? I don't know. All I know is that my mum came to the school to pick me up. She told me that one of my teachers, an invigilator for the exam, told her that I hadn't been able to write my name correctly on the exam paper. My mum realised something major had gone wrong. We went to the GP and forced a referral to Whiston Hospital (where I was actually born, and as a matter of coincidence, Steven Gerrard was born too).
I spent quite a long time in Whiston... I was in there for a week before the consultant came to visit the children's ward that I was on. The previous day had been immensely frustrating and scary. At one point I had totally failed to converse with one nurse, groping for phonemes, hardly able to pronounce a single sound and she had eventually given up on me, waving her hands in exasperation. Imagine that.
I was lucky to be seen by this particular consultant. She was a woman that my mum and I had met her quite a few times as she had previously been consultant at a different outpatients clinic that I had attended, so she knew my history and also mannerisms to a certain extent (though I was always pretty locked down in those days). Well, this consultant, Dr. Cramp, gave me some neuro-psychological tests: arithmetic, physical coordination, ability to walk in a straight line, etc. I managed most of them and was able to recall words but unable to pronounce them. I struggled with arithmetic...particularly abstract things like carrying the four (for example) when doing additions. Dr. Cramp's comment was "this isn't the Richard we know".
I was then taken by ambulance (and friendly scouse ambulance drivers driving at worrying speed) to the neurological unit at Alder Hay hospital (now closed: thanks Thatcher) for an MRI or PET scan, I can't remember which. Needle in the back of my hand and needing to hold absolutely still for about ten minutes. I did have one false start, but managed to hold still for the duration in the end. Then we went back to Whiston Hospital to await the results of the scan.
I remember the consultant discussing the results with another doctor (a black guy) and my parents. They said there was a bleed in some area of my brain that I didn't catch, and am still ignorant about. Then they sent me away to the play room in the paediatric ward at Whiston hospital, where I could look at old dusty (possibly hallucinogenic) ex-library books and grimy fisher price toys. I can still smell them in my mind's nose.
While I waited, contemplating my bleeding brain and the possibility which had been mentioned already, of exploratory brain surgery, journalists from the local newspaper arrived, wanting to take a photo of some of the children who happened to be present on the ward at that time. I was one of them. I probably couldn't have said cheese, thanks to that tricky affricate at the beginning... and didn't feel like smiling. Still, I tried. When you look at the photo below, try to remember that. One of the kids' brains is bleeding.
There was a CAT scan involved somewhere, but I don't remember which hospital that was. This was quite some time ago. I'm guessing the CAT scan was done first (at Whiston) but it might actually have been later. By the time this whole incident was over, I would have had three: CAT, PET, and MRI.
There was a bleed visible on the scan, it looked about the size of a walnut (the darkness). I was then told I may need brain surgery to investigate it. For that, I'd have to go to the neurological unit at Walton Hospital. I think it was here that they did the CT scan (a cheaper process than the MRI, but anyway). There was a second MRI scan too, I think, just days before the scheduled exploratory surgery. A chance for the doctors to get the latest bulletin from the front line conflict between blood and brain.
I remember the surgeon had very big fingers. He told me about the chances. 10% death, 20% permanent paralysis. If we don't operate, the problem might clear up on its own. It might get worse and kill you.
Basically, as I have heard neurosurgeons say since the operation, it's Russian Roulette with two revolvers. One revolver is surgery and one is doing nothing. Both have risks and the art is to correctly assess which risk is the lesser, and taking it.
On balance, they recommended surgery. My parents would sign for me, but I was there for the conversation... for the decision, and as someone who had been trapped into silence by this problem (this cavernous haemangioma), I did not consider "doing nothing" as an option.
10% and 20% are sizeable risks, but worth taking in my view, then. All I can say is that I had faith. And yes, my views on religion were simpler then.
The surgeon, a consultant, Mr. Cunningham, explained about the operation. They would cut a horseshoe shape in my skull. I asked him, and he said that yes, the cut would be angled to create a bevel that would stop the piece of skull from falling onto my brain before it had healed after the operation.
The opening of the horseshoe would serve as a hinge of skin, scalp, and muscle that could be pulled open for the operation. The position of the bleed was under the surface of my brain, so some small cutting through would be necessary. This was all factored into the risk assessment (I guess).
During my hospital stay, various drips were put into my arm. With maybe 24 hours to go, an attractive young female doctor took one out and exchanged it for a higher gauge needle to deliver controlled quantities of both insulin and glucose into my system. It took her six, count 'em, attempts before the needle was in the right place, the crooks of both my elbows dully bruised.
The new drip had an irritating habit of beeping every time it would administer something, something it did every 15 minutes or so. I remember interfering with my sleep. By this time, I was so institutionalised that I'd become like an insomniac - never really awake, never really asleep.
On the day of the operation, I was wheeled on a hospital trolley by one or two nurses and my parents. They did crash the trolley through the push doors of the hospital... the smell of antiseptic must have been everywhere. I usually notice it when I'm walking through a hospital, but perhaps I was so institutionalised by this point and used to the smell that I didn't notice it.
I believe I was naked except for a hospital gown, but not warm and not cold. My parents wished me luck. I looked at my dad and said "I can't believe this is: my first operation and it's brain surgery." Uncannily, my verbal articulation had improved during my time in Walton, though it did still cause me the occasional problem.
My disability had reached its nadir in Whiston hospital near the start of all this, when the bleed was not even a shadow on a scan, gliding through the water. It's always like that when you see a doctor, I guess, the symtoms that have bothered you for the past week suddenly vanishing.
They left me at the elevator, my mum squeezing my hand and wishing me luck. The nurses were with me. They took the brakes off and we dropped at speed down through the lift shaft. And there is descent: long and fast. A sense of consequence.
I'm glad I never saw the surgical saw they'd use. If I had, my fear would have been far greater. Instead, I went into the operating theatre with a sense of acceptance and passivity. No fight. No real fear. Just a heart-felt prayer. One of the nurses put another needle into my... wrist, I think. They transferred me to the operating table where I passed out. I asked them some questions, but they were questions of no consequence. Did the surgeons arrive while I was conscious? I believe they did... I believe so. They asked me to count back... slowly... was it back... from what number? I don't really remember. I fell into the darkness of that first brain scan.
I awoke from the darkness into the gloom of a night time hospital ward. It was winter, and the only windows in sight were the doors to the ward that opened onto brightly lit hospital corridors. The nurse's station provided the second source of illumination. I believe, in a daze of anaesthetic, the person I awoke to was the sister of the ward. In no time, it seemed, my parents were there. I raised my right leg and arm. No paralysis. I felt relief. We talked. They asked me whether I was OK. I said I think so.
The Lockerbie disaster had happened. Hundreds dead. The plane had crashed into the village, a small village that would otherwise never have been noticed or brought to the attention of the world. Hundreds dead and I was alive.
I would learn later, that my mother had asked for a prayer to said for me at the local methodist church one Sunday, and the methodists in the village of Farnworth prayed for me. I'm not sure whether they prayed before the operation, or after it, but it made me think. I did feel grateful. My perspective on reality had changed.
I believed in the existence of God. But not as we know him. It was something abstract, like a law of probability. I believed there were an infinite number of parallel universes. In one fifth of them I am paralysed on the right side of my body, in one tenth I am a vegetable, and in another tenth, I died and no aeroplane fell in a fiery slalom through the small terraced houses in the village of Lockerbie. The conscious I am writing this in the best of my possibilities. I cannot speak for you.
Later, I found that I could hardly open my mouth at all. It would only go as wide as the width of my thumb, perhaps a little more. (Several days later, I brought this to the attention of the consultant surgeon. He explainied that in sawing open my skull, it had been necessary to sever a tendon on that side of my scalp. He expected it would heal in time. It did, though it took longer than I had thought before I could get my mouth fully open again to stuff my face with Tuc biscuits).
Later still, I tried to raise my head, but couldn't. It hurt when I tried. I felt a pulling at the back of my head and pain on the left side of my scalp. Something pulling and threatening to tear? I never saw the tube running under my scalp.
They referred to it as a drain. I suppose it was there to allow blood and fluid from the trauma of the surgery to be released from the confines of my skull where it would otherwise cause harmful pressure. There seemed to be perhaps three quarters of a litre of blood in it when the tube was removed the next day, or maybe the day after.
Taking the drain out was uncomfortable... probably the most painful thing I felt during the whole affair. There was spilt blood and yes, there was a sucking gurgle; at the time, I was sure that that sound came from my skull, but surely it was from the bottle(?); when it was freed.
The cavernous haemangioma itself never caused me any physical pain. Like a girlfriend, the pain it caused was all emotional, about possibilities smashed and futures abandoned. I did have a feeling of grogginess after the brain surgery, but I believe that was mainly a result of the anaesthetic. Were there headaches? There were, there was some pain, but nothing that left me sleepless. Having said that, I was prescribed a few days' worth of pain killers for after the operation. I don't remember any description of their potency from the doctors. They either worked well, or weren't really needed.
Was the operation successful? This is a very difficult question to answer. I'm a single man working as a researcher, umm-ing and er-ing over whether to start a PhD. I got an upper second in my first degree, got my master's.
What if this whole affair from the fag-end of the 80s (to para-quote Bruce Robinson) hadn't happened? Were there universes in that infinite set where I have a first-class bachelor's degree and a distinction for my master's? Were there universes where I am married and have children? have fulfilled my ambition to write a work of fiction (it's a best seller and I am a billionaire)? Am not pissing my time up the wall with this widely read blog?
May be there were, but maybe you had such possibilities too, yet here you are, reading this ballocks. Fuck it, OK, I say it was a success.
I was warned that they'd monitor me for six months after the operation because there was a chance that I'd suffer from epileptic fits. I'm now in the second year of the third decade post-op, and I still haven't suffered from one... I sometimes forget to keep my fingers crossed on that and maybe that's a good sign in itself.
I have no regrets about the decision I took to have a horseshoe shaped cut made in my roof and my attic opened up to the light and the breeze. Who knows, maybe it cleared out some of the cobwebs.
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