LONDON, England / The Guardian / Life & Style / Health & Wellbeing / November 3, 2009
First person
My brain abscess and me I had no idea I had a potentially fatal infection. Now, after my life-saving surgery, I will never take my health for granted again
Tim Lusher was diagnosed with a brain abscess in May this year. Photograph: Martin Godwin By Tim Lusher
May 2009: dizzy and confused
It felt like sea sickness at first, or a hangover, only I hadn't been travelling or drinking. Yesterday I rounded off the bank holiday weekend with a three-mile run in the park, then rested on the sofa, happy and refreshed.
Now I feel dizzy and disorientated, as though I'm struggling with a mild virus. At the office, I realise I can't focus on the speaker in a meeting: I see her profile in double. I've never experienced anything like this before and feel a shot of concern.
The following morning, Wednesday, I visit my GP, who examines me and finds nothing obvious to explain my growing malaise.
Could I have labyrinthitis, a viral inner-ear infection?
She agrees it seems the most likely diagnosis.
My blood pressure is high, so I am to return for a test. I'm sick in the evening.
The next day, I leave work at lunchtime and go home to bed.
On Friday, the nurse taking my blood finds a doctor to see me because my nausea and giddiness are worse.
As I vomit in her room, the doctor diagnoses benign paroxysmal positional vertigo (BPPV): displaced calcium particles in the inner ear that disrupt the balance as they float through the canal. She gives me an anti-sickness jab and I stumble home. The condition should resolve with rest.
I pass the weekend in a miserable blur: dozing, sipping squash, swallowing grapes and prochlorperazine (tablets for dizziness and nausea), and then hurling it all up again at regular intervals.
This is probably the moment to call an ambulance. At some point, my boyfriend P looks at me quizzically and asks, "Are you dying on me?"
But it seems too ridiculous; I feel no worse than with flu. This is surely just a passing bug. Besides, if you have no experience of serious illness, the idea of calling 999 for anything other than a TV-standard trauma sounds too alarmist, melodramatic.
Nevertheless, on Sunday we finally phone NHS Direct twice. A doctor visits, says it is probably BPPV and gives me another anti-nausea shot.
On Monday morning, I stagger with P to the emergency ear, nose and throat clinic at a local hospital, to see if someone can fix the problem with the Epley manoeuvre, a few twists of the head to guide the floating particles into the right position.
I repeat my symptoms – which now include an ache across the back of my head and slurred speech – to a doctor.
He thinks it's viral labyrinthitis and should go after a couple of weeks, but he gives me an antibiotic prescription in case it's a bacterial infection and advises bed rest. It's a cursory appointment and I have to coax him to try the Epley manoeuvre.
He marches me to a treatment room and quickly rules out BPPV because I feel bad no matter what position my head is in.
Finally, on Tuesday morning, someone realises something is horribly wrong.
My GP sees immediately that my gait is clumsy, my focus wild, my speech slurring. She sends me straight to A&E at the Royal London hospital and phones ahead to order a brain scan.
There, I collapse gratefully into the care of doctors and nurses.
The next two days are mercifully blank, for me at least. For my family, the horror starts.
The scan shows a mass, probably a tumour, on the cerebellum, the small lower part of the brain that coordinates movement, balance and the senses.
My parents rush to the hospital and my brother flies over from Hong Kong, leaving behind his pregnant wife.
Their vigil is agonising: the scanner needed to give a second image has broken down.
Little happens for 48 hours. I'm cheerful, disconnected, blissfully unaware of the panic, although I need a walking frame to get to the bathroom.
I fall over on the ward, my speech grows incomprehensible, my eyes are unfocused and I'm confused.
On Thursday, I become aware that a group of doctors has gathered to tell me about the operation they are going to perform. They now think it's an abscess, a sac of pus that has built up on the brain, which is growing fast and will kill me if it bursts.
I feel strangely calm, long past protest or concern, and relieved that some end to the sickness is in sight.
My parents say goodbye, leaving P and my brother to shave me and to say their goodbyes as well, in case I don't come back from the operating table – or at least, not as the person they recognise.
On Friday morning, I text final messages to each of them, then in a cool, tiled anteroom to the theatre, I watch the anaesthetist prepare the injection, suddenly aware for the first time in days of my surroundings.
My family pace the streets, killing the hours until there is news.
The operation: out all day
The surgeon cuts up the back of my head, saws off a couple of centimetres from the base of my skull, and drains more than three teaspoons of pus from an abscess that has built up on my cerebellum. The operation should take 90 minutes but I'm out all day.
As soon as I wake, I know – with a surge of elation – that I have my mind back. My thoughts are clear. The world is plugged in again. I can wiggle my toes. The only discomfort is a dull tightness on the back of my head. I feel as though I have been walloped with a frying pan. I wave to my family as I'm wheeled into the high-dependency unit.
They huddle round and we talk excitedly until the nurse comes to give me the first dose of what is to become an epic drug regime.
I don't sleep for the first three nights. Partly this is survivor's euphoria – my mind is racing with plans about how to improve my life – but the initial drug cocktail causes insomnia, a nurse explains.
I need three bags of antibiotic on intravenous drip every day, and more in tablet form. I am also on steroids to reduce the swelling. I can have paracetamol for pain, but there isn't any to speak of – just a Frankenstein-like stiffness to my head and neck, and the familiar dizziness when I walk around the ward for exercise.
It turns out I am a medical curiosity. Cerebellar abscesses are rare, Dickensian things that, even with modern surgery and drugs, are likely to prove fatal. Thirty years ago, death would have been inevitable. There were only 517 admissions in English hospitals for brain abscesses in 2008/9 but, unlike me, patients are usually HIV positive, on immunosuppressant transplant drugs or cancer treatments.
What is odd is that doctors hardly ever see this illness in an otherwise healthy man of 41.
They will need to check my teeth for faulty dental work (the most common source), look at my ears and sinuses, scan my heart and abdomen for infection.
Within a week, the microbiology lab confirms the bacterial pus is Streptococcus intermedius, which causes mucosal infections. But the doctors warn that they may never find the source of infection or an explanation as to why my body could not fight it off.
Each test draws a blank, which means no extra treatment but only adds to the mystery.
Why have I been struck so randomly by this monster bug? There is no answer but bad luck.
I will need antibiotics for six weeks to be sure of seeing it off – serious amounts of antibiotics – and they quickly take their toll: I wake in the night to be sick, throw up again when the first drip of the morning trickles in at 6am, and keep on being sick until I come off the last drip at 10pm.
The dizziness is no better, and I rage when I can't manage the physiotherapy exercises. There's no pain; I just feel as giddy as if I've sunk a bottle of wine.
For the rest of the fortnight I spend in hospital, I settle into a routine of tests, medication, avoiding the food trolley (everything is beige and smells like cottage pie so P and friends run a catering relay) and watching episodes of 30 Rock and old movies on my laptop.
Not that my spirits need lifting: I feel defiantly upbeat. I intend to reinvent my life so there is less drudgery, more joy. I plan trips to France and Hong Kong. I draw up a schedule to quickly wrap up our house renovations. I go on internet shopping sprees: I spend a day researching light fittings, then order a flatscreen TV, wireless printer, digital luggage scales and a salad spinner. P is suspicious. He has been reading up on brain surgery: the aftermath can bring personality change.
"You're quite hyper and you're being very optimistic," he says. "And that bothers me because basically I don't think of you as a very positive person."
I find this hilarious.
The tests reveal nothing is wrong. A dentist appears in my room at 3am to inspect my teeth by torchlight but they look fine.
A brain scan shows the surgery has been a success.
I am presented to a roomful of neurosurgeons who try to guess what was wrong with me, but none can.
My final hurdle is having a Hickman line fitted in my chest so that nurses can administer the twice-daily drips I will need for the next four weeks at home. I am more nervous about this than the major surgery.
The procedure is unpleasant under local anaesthetic, but over in 10 minutes. Finally, I can go home.
June: non-stop vomiting Using the Dymo label printer I have thoughtfully ordered (I knew it was a smart purchase), I mark a plastic box with my drugs and doses. Ramipril for high blood pressure. Cyclizine for nausea (it doesn't seem to help much). Metronidazole, a foul-tasting antibiotic (listed side effect: nausea) I must take three times a day. Lansoprazole, to protect my stomach from the antibiotics. Prochlorperazine, for the dizziness, although it has no effect on me.
P has already filled a crate with everything I need for my intravenous treament: bottles of ceftriaxone, an antibiotic in powder form; saline fluid to dilute it; drip bags and lines; syringes; disinfectant sprays; swabs and dressings to cover the Hickman line; replacement valves.
It's a wasteful business: there's a bag of rubbish every day. Nurses come at 9am and 9pm to mix the ceftriaxone and chat to me while it drips into me and I try to ward off the creeping nausea.
My days are now about throwing up and trying to avoid it. The moment I wake and sit up, the vertigo starts – and always one step behind, waiting to overcome me, is the nausea. Some days I vomit seven, eight times – vile, Kermit-coloured streams because there is no food left to keep down.
By the end of the month, I have lost about two stone. I have barely any appetite because I know it won't stay down for long. Every so often, there's a small miracle – a day passes without sickness. I'm too weak and giddy to want to leave the house, but when I do the pavement pitches and yaws and the sky rolls as I turn my head to cross the road.
It's like walking on a ship's deck in a storm.
In any case, the nurses talk to me sternly about my "high energy levels" and tell me I'm to do nothing but rest.
So I sit on the sofa, snooze, eat when I can, watch undemanding TV.
The sickness gets worse as the weeks pass. I wonder if I have brain damage and will always feel this way, but am convinced it is the relentless flood of strong antibiotics that is making me feel terrible. Everyone suggests a different remedy; none seems to work. Some mornings, just the bitter taste of the metronidazole or the bleachy smell of the ceftriaxone sets the day off on a disastrous course. My parents nurse me tirelessly through the last weekend of the treatment. The day after I take my last tablets, the vomiting stops briefly. I am jubilant.
July: swine flu scare
In theory, there is a risk that the abscess could recur, so I need to keep an eye on my temperature. The scheduled tests to find what caused the infection continue – and keep coming back clear. It seems to be a freak occurrence. ENT doctors put an endoscope up my nose to check my sinuses (horrible sensation), but there's no problem. My hearing is normal, although I now have a little tinnitus in my left ear.
Strangely, I think my sense of smell has grown more acute. A scan of my pelvis and abdomen shows no abnormalities. There is no hole in my heart that could explain the infection. Another head scan shows the swelling has reduced. I am ghoulishly fascinated by the gap at the base of the skull, where my brain is now only protected by a thick layer of muscle, but the consultant is unconcerned, as long as I don't take up bungee-jumping.
Despite all this good news, I have hit a plateau. I pass the days in a listless torpor, reading, watching DVDs, staring at the wall, soaking up the silence of the empty house, waiting to feel normal again, but the change never comes. I can barely face climbing the steps up to the garden. If I walk to the corner shop, I fall into exhausted sleep on my return.
We spend a weekend in a Suffolk hotel. At breakfast, I have to rush outside and throw up in a hedge. My friends are worried but I'm just overexcited by the change of scene: I have pigged myself on Coco Pops, melon, croissant, a full fried breakfast, apple juice and coffee. These days I have the stomach capacity of a supermodel. I try to reassure them. But later, when I go to my room to rest, I'm sick all over the wall and carpet. Before I can crawl into bed, I spend 10 minutes scraping vomit out of the pleated lampshade. No one can tell me how long it will be until I'm better.
Straight after the surgery, when I pressed the doctors, one said that patients took anywhere from three weeks to three months off work.
My consultant seems surprised that I'm still suffering dizziness and says it will pass over a course of months.
When my temperature shoots up and I'm briefly re-admitted to hospital (they quarantine me as they think I may have swine flu this time), another doctor is franker. It could be six months or a year before I'm back to normal – if I do make a full recovery, that is. I miserably recall reading that the human lifespan is less than 1,000 months. The wait already feels interminable.
August: first proper wash
I've taken shallow baths, but because I had to keep my head dry for the first two weeks and then avoid getting my Hickman line wet, I haven't had a proper shower or soak in the tub since May. Now, a week after having the Hickman line out, it's a huge relief to finally stand under running water until I feel clean. The nausea is not as bad now if I don't move around much, but turning my head can instantly bring it on. Small, everyday activities such as shaving, cooking and crossing the road are major challenges. Doing laundry or unloading the dishwater sends me rushing for the sink. My physio exercises – staring at a finger in front of my eyes as I turn my head – trigger violent puking. I wake each morning hoping the dizziness will have passed, but it stays. I take slow, faltering walks to escape the monotony, but all my efforts are focused on limiting my vertigo.
Friends phone and visit, and I spend hours reading on the internet, but the world seems to have shrunk, grown muffled and distant. I marvel at the speed and ease with which other people move around: laughing, getting on with their lives.
Meanwhile, P grows more exhausted as he juggles his work and caring for me. It seems like a cruel joke when he suddenly gets an abscess too.
September: another invalid
P's problem began as a boil on the bum but quickly goes ballistic. When I persuade him to limp along to a walk-in clinic after four days, the nurse sends him straight to A&E, where doctors decide he will need surgery to cut it out. We spend two days apart and alone, while he waits on a ward for a theatre slot. The situation feels farcical.
"What is it with you two? Do you live next to a nuclear power station or something?" asks one of his colleagues.
But as P hobbles around the local park after he's discharged, with me zigzagging at his side trying not to crash into the trees or throw up on the squirrels, we decide to go ahead with a two-week break we have planned in Greece.
And there we become mutual carers: he drives and cooks; I wash the pus out of his wound and redress it each day. It's a small turning point. I'm only sick once in public, and we both return feeling rested and fitter.
November: lucky to be alive I'm still dizzy although the sickness is rarer. More tests have shown there is nothing wrong with my central nervous system or the balance centres in my ears. My vertigo is a temporary legacy of the abscess and surgery, which have disturbed the cerebellum. Where does this leave me? The doctors agree that I only narrowly avoided death and am lucky to be alive. They also all think I will recover more or less fully, although no one likes to offer timespans. I have to face the possibility of living without perfect health.
Perhaps I will have to adjust to disability. It is still far too early to resign myself to anything but there are all kinds of uncertainties ahead: how will my work be affected? Can I deal with a frantically busy office? Will I cope alone with major travel? Can I keep my driving licence? Will I ever feel comfortable running, climbing, cycling again? Even gardening? I'm certainly improving, and I'm oddly grateful for some of what this terrible experience has done to my head. It has placed terrible strains on P, my parents and brother, but has pulled us incalculably closer. My family, friends and colleagues have moved me in many different ways with their love, kindness and thoughtfulness. In myself, I sense a more positive general attitude.
I feel more empathy with other people's struggles. I hardly care as another month brings new annoyances: my computer breaks, my Vespa gets stolen and a builder warns us that our roof is about to cave in. I'm less inclined to fret about both the small stuff and the big challenges, more determined to rediscover what I love in life and enjoy it again for as long as I can.
Five months after I fell ill, I'm finally preparing for a gradual return to work. It's the first, unsteady step to reclaiming the life I nearly lost. It has been a long road back, and I'm not there yet. [rc]
© Guardian News and Media Limited 2009
