Carel Dolman was 38 when he was diagnosed with Parkinson’s disease. Seven years later he is having two electrodes implanted into his brain to relieve him of the debilitating tics he suffers from. The operation is possible only if he remains conscious throughout.
THE TANNED MAN on the mobile hospital bed in operating theatre 9 is asked his name.
‘Carel’, he says, ‘Carel Dolman.’
Michiel Staal is standing next to the bed. The neurosurgeon asks whether Carel Dolman knows that they’re going to operate on his brain.
‘Yes’, he says. ‘God, yes.’ Of course he knows.
And does he know he has to remain conscious throughout the operation?
For months Carel Dolman has been brooding about this. How Professor Staal will open up his skull, drill two holes and then take a needle and delve down ten centimetres into his brain. And how he, Carel, must then say if the needle is in the right place.
Carel Dolman nods.
It is twelve minutes to eight on a Tuesday morning in September.
This story was out of more then 800 competitors from 25 European countries awarded with the EU Prize for Health Journalism.
LET’S GO BACK THREE months. When Carel Dolman speaks, the table follows suit. That’s because every part of Carel moves – his arms and legs, his hands and feet. All at once Carel picks at the skin on his neck, crosses his legs, folds his arms across his chest, bends over the edge of the wooden table – bang – and then leans back again. Then he fidgets with his neck. Then he crosses his arms across his chest because, thankfully, he’s stopped for a moment.
Carel Dolman apologises and then pulls the chair next to him towards himself. It’s no longer touching the table now. It falls silent.
Carel Dolman – in his forties, gym teacher, married with two young sons – tells how it started, almost seven years ago now. During a meeting at school, he discovered that he could no longer read his own handwriting. He had to stop and think about every letter. And then there was that strange fiddling. He went to his doctor, who suggested it was writer’s cramp. That was it then. At least until Jolanda, his wife, asked Carel what was wrong with his feet.
He was shuffling.
Carel Dolman went to a see a neurologist, who ran blood tests and scanned his head. The doctor was already on the verge of saying he couldn’t find anything when he took another look at Carel’s odd gait, turned his wrists and said: ‘I know what it is. You’ve got Parkinson’s disease.’
Carel Dolman was 38 years old. He still wanted to teach his sons to windsurf. He’d planned to take them cycling in Friesland. He wanted to take them skiing in winter.
He told only close family, some friends and his school’s head teacher about the diagnosis. At least until people in his village began talking about him. The fact that he’d grown a goatee, his stiffness and clumsiness.
Class 4 were the first ones to hear the news.
‘Guys, come and sit down for a second.’
One of the boys had a grandfather who had it too.
‘How old is your grandfather?’, asked Carel Dolman.
‘God’, he said, ‘I’m not even halfway.’
CAREL DOLMAN IS LYING on the mobile bed in operating theatre 9. Professor Staal has asked him the questions the protocol requires him to ask. The anaesthetist has attached blue, yellow, green and red wires to his body. Carel is a little drowsy but resolute. He can do it.
At half past six he is awake. He hasn’t slept at all. Is that because of no longer being allowed to take his medicine? Or on account of nerves? He hadn’t banked on this. The night before, in room 32 on a ward in Groningen University Medical Centre (UMCG), he’d talked it over with Jolanda once again. How the people next to them on the campsite in the south of France had stared at him constantly. As if he ‘wasn’t all there’. The wild movements his arms made, the way he picked at his neck, all the tics he had, always unsettled, never still, it was so infuriating.
That was the first time Carel had felt people were looking at him, there on that campsite.
He had told Jolanda he’d had enough. Enough of the pills which were no longer effective against the stiffness and the clumsiness. Enough of the other pills which drove him completely crazy. Carel was constantly bidding for boats, thousands of euros, and sat up all night on the internet. Jolanda had already put his suitcases by the front door when a nurse said that this compulsive behaviour was a known side-effect of the drugs he was on. Carel had to start taking another lot of pills, which eventually, over a year ago now, made his tics increase. He lost ten kilos, his body became thin.
Without pills, Carel Dolman could barely function – he was ‘off’. With pills he was ‘on’, so ‘on’ in fact that he was like a Duracell bunny. ‘There’s no letting up. You have to keep going. And everything is whirring about in your head.’
Jolanda learned to live with it. His sons had never known anything else. But the day Carel Dolman would eventually need to stop working drew ever nearer. It was then that he heard about the surgery. Jolanda was completely against the idea. ‘I’d prefer them to cut your foot off rather than root around in your brains.’
But Carel Dolman didn’t hesitate, and now, at twenty past eight, he’s been to the toilet three times, and support specialist Cor Kliphuis is using a clipper to shave the stubble off Carel’s already short-haired head. Kliphuis then lathers up his skull in shaving cream and uses a blade to remove any remaining hair.
‘It’ll feel cold’, warns Kliphuis, before dabbing Carel’s silky smooth head with disinfectant.
‘Yikes’, cries Carel, almost cheerily.
Kliphuis promptly places a pillow over Carel’s legs. He briskly clambers on top of Carel Dolman, who is lying on the hospital bed, his knees on either side of Carel’s upper body. In his hands Kliphuis holds the heavy, square-shaped crown of dark metal trimmed with stripes which Carel recognises as the ‘frame’. Professor Staal, Carel’s neurosurgeon, stands behind the bed’s headboard. When Kliphuis holds the crown over Carel’s head, Staal (‘This shouldn’t hurt’) begins to turn the screws, one at each corner of the frame.
Carel Dolman’s head has been injected with a local anaesthetic. He barely feels the first sharp point pierce the soft areas of his scalp. But when Staal forcibly fixes the metal frame, as one would adjust the nuts on a car wheel – left one, right one, left one, right one – he feels the pressure on his skull. Keep breathing now.
The ends of the screws penetrate two or three millimetres into the skull bone itself.
It’s as if his head were held in a vice.
‘That’s quite uncomfortable’, says Carel Dolman.
Kliphuis knows the anaesthetic is keeping Carel Dolman calm. He’s finding it slightly less painful than it actually is – and he’ll remember less.
This is the part most people prefer to forget, thinks Staal.
FROM THE OPERATING theatre Carel Dolman is wheeled across the beige marmoleum of the hospital corridors just after half past eight to the CT scan. He hears the tapping of shoes, Kliphuis’ calming voice, the whooshing of the air-conditioning, the opening of the lift doors, and knows what’s coming. It’s not his first brain scan, but he remembers the panic he felt the first time, stuck in the MRI for one hour, sealed inside, earplugs in his ears and still he could hear what sounded like a circular saw inside his head.
Cor Kliphuis had showed him his brain, a grey goat’s cheese made up of a hundred billion nerve cells, with the scan showing lighter and darker patches. Kliphuis pointed to the substantiae nigrae in the middle of his head, which are no longer doing what they’re supposed to. They aren’t releasing enough dopamine. This means that two other areas the size of coffee beans, gearboxes which control motor skills, are going haywire. As is Carel himself.
One floor below the operating theatre Carel Dolman, crown atop his head, is loaded into the CT scanner. Ninety seconds later, a second image of his brain has been created, which is combined with the image from the MRI scan on a computer. The result is a three-dimensional image of Carel Dolman’s skull, which is used for the grim process of working out precisely how Professor Staal’s needle will soon penetrate those coffee beans, deep enough to stop those frustrating tics.
JUST AFTER NINE o’clock, a pop song blares on the radio and Cor Kliphuis screws the crown on Carel Dolman’s head to the operating table. A piece of blue flannel and an inflatable pillow support Carel’s neck. As soon as he is lying comfortably, Professor Staal, Carel’s neurosurgeon – using a black permanent marker – marks on the bald head where he will cut the skin open. He works by touch, feeling for the cranial sutures he needs. He has done this hundreds of times before, but ‘nothing is ever routine’.
‘I’m going to give you an injection now. Is that OK?’ asks the surgeon.
‘Do I have a choice?’ answers Carel Dolman.
‘You can say no, but I wouldn’t advise it.’
Whilst the anaesthetic is starting to take effect, the theatre support worker sets up a transparent plastic screen between the rest of Carel Dolman and the black line on his head. The screen is attached to his skull using brown anti-bacterial foil. Only the part of Carel’s head where Staal will be working is exposed, on the sterile side of the theatre where the surgeon operates.
Someone turns off the radio.
With a scalpel Staal cuts Carel’s scalp open, the first incision going through the adhesive plastic and the skin, after which he pulls two lengths of surgical suture through the flap of skin and clamps these to the surgical drape.
When the surgeon cuts deeper into the skin, into the subcutaneous fat and periosteum, with an ‘electric scalpel’, Carel Dolman smells the odour of burning flesh.
‘It’s just like spot welding’, says Cor Kliphuis.
Staal’s assistant vacuums up the blood, helps to cauterise small blood vessels and make a second incision above Carel’s right ear, and applies gauzes to the wound, slowly transforming Carel Dolman’s head into a wild avant-garde painting with yellow and brown tints of iodine: a crumpled, messy mummy.
Carel Dolman doesn’t see it, but lets it happen nonetheless.
The odours drift across into his world on the other side of the sheet along with the ticking of the equipment and the voices which softly confer with one another. He can only look towards the foot of the bed, at the sheet across his restless legs. He hears the shrill, sharp whining like that of a dentist’s drill when Staal mills a slit into his skull, a few centimetres long, a ‘twin bed’ as the surgeon calls it, where the flat, plastic connector will soon lie neatly. This will connect the wires in his head to a wire in his abdomen.
It’s five past ten when Staal makes the stark announcement that he’s about to begin drilling. It sounds casual and solemn at the same time, as if he’s about to cut a cake. But Carel Dolman reads the signal loud and clear. He isn’t scared. He will barely feel the drilling – bones contain no pain receptors – and the drill turns itself off automatically once it has breached the bone. But he will hear it. Breathe through your open mouth, advises Kliphuis, then your head won’t resonate as much.
Staal places the drill on the bone and in three minutes he makes two round, penny-sized holes, one on the left and one on the right.
A LITTLE DEEPER STILL and Staal screws a long, thin needle into Carel Dolman’s head. The needle follows a predetermined route. An arc has been attached to the frame which changes the depth as the end of the needle nears its target, millimetre by millimetre. Brains can withstand this, explains Staal. ‘You know what path won’t cause any damage, the path where nothing will go wrong provided you stick to it.’ What’s more, brains can’t feel any pain.
Behind the transparent plastic, neurologist Teus van Laar, who entered the operating theatre a moment earlier, calmly talks to Carel Dolman. He asks him to name the months of the year – ‘January, February, March…’ and he feels Carel’s left hand to see how flexible his wrist is. He observes the state of Carel’s eyes, and looks for any cramp in his hand. He also has Carel Dolman tap his thumb and forefinger against one another.
This is where everything comes together. This is why it is, as Staal notes, ‘incredibly important that you know each other very well’. The surgeon who inserts the platinum tip of the needle. The neurologist who assesses – ‘you need to have done it many times before’, says Van Laar – how a patient reacts. And Carel Dolman himself, who must remain awake, so awake that he can hear something that sounds like seals crying coming from the loudspeaker next to him. That’s how his brain sounds then, that’s what that overactive coffee bean in his head sounds like once the needle has reached its target and the electrical signal is converted to sound.
Van Laar keeps testing how Carel Dolman reacts to the electrode’s electrical pulses, first on the left side, then on the right side. One volt, two volts… and on up to four volts. This for each of the electrode’s four contact points. How loose does Carel’s elbow feel? How much does he stumble over the tongue twister ‘artillery’? How are his eyes moving? Are his feet tingling? Can he still tap his forefinger and thumb together?
Staal and Van Laar – ‘We don’t stop until we’re both happy’ – keep searching for the best spot. One millimetre deeper into the coffee bean, one millimetre that way. It was easy to find the correct spot in the right hemisphere of Carel Dolman’s brain, a ‘hole in one’ as Van Laar says, but the left hemisphere is counterbalancing this. ‘We’re close’, says Van Laar, ‘we’re almost on target but not quite.’ A while later he says, ‘It’s better now, but it’s not as definite as the other side was.’
Sometimes, as Staal and Van Laar know, a Parkinson’s patient can stop shaking immediately once the needle is in place. When this happens, they never fail to be moved. There is something mysterious about it; despite their expert knowledge of brain cells and neurotransmitters, they only partly understand why the brain reacts to these electrical pulses in the way it does. But every time it works, Staal says he feels a thrill.
AT QUARTER PAST TWELVE Staal uses blue adhesive and some bone dust, set aside on an aluminium tray during drilling, to attach two thin wires running into the holes in Carel Dolman’s head. The ends of the wires attach to a flat, white, plastic connector which
Staal places in the ‘bed’ he made earlier. He then stitches the periosteum and skin.
Carel Dolman makes use of a bedpan.
The head wound is closed up. The screen is loosened and taken away. Cor Kliphuis unscrews the crown. At quarter to one, Carel Dolman is sitting upright, a white bandage around his head. He is tired. Incredibly tired. Good job he is being put under then.
WHILE NEUROSURGEON Michiel Staal grabs a quick sandwich, Carel Dolman is given general anaesthetic in preparation for the second part of his operation. He is now lying naked on the operating table. His whole body has been covered with a green surgical drape. 50 cm of stretched skin from his right ear to his side is all that remains uncovered.
Staal washes his hands again, scrubs his arms with a brush and puts on new surgical scrubs. Elton John is playing on the radio. Nikita. The surgeon re-opens the wound above Carel’s right ear which was sewn up earlier that morning, makes an incision in Carel Dolman’s side and pushes the end of a 50 cm-long, hollow awl under Carel’s scalp. Staal has to exert considerable pressure to force the ‘tunneller’ through the subcutaneous fat, under the throat, over and along the collarbone – not under it, where the lungs are – along the rib cage, pushing (‘a bit like poking the fire’, according to Cor Kliphuis), until the end of the awl emerges from the vanilla-yellow fat on Carel Dolman’s abdomen.
Staal is handed a small box, freshly unwrapped and a little smaller than a pack of cigarettes. The machine, a sort of pacemaker, contains a battery which will send pulses to Carel’s brain for many years, pulses designed to keep the overactive areas under control. Carel Dolman’s body relaxes as his movements return to a degree of normality.
Cor Kliphuis checks the wiring, which runs from the pacemaker in Carel’s abdomen, under his skin and up to his skull. ‘You don’t want a bad connection anywhere, because then everything will have to be opened up again.’
Staal sews up the head wound. His theatre assistant closes up the abdominal wound.
‘Carel, it’s over’, says the anaesthetist. It is five minutes to two. But Carel Dolman will not wake for several hours now.
THREE MONTHS LATER Carel Dolman is standing in the doorway of his house. His face has filled out, and under the scar on his forehead he is grinning from ear to ear. He stretches out his arms, just as he did when he first came round from the anaesthetic. He does it so calmly.
Carel Dolman can once again shave without worrying. He mows the lawn. He fixes his sons’ bicycle punctures. He can boil potatoes and doesn’t spill coffee. ‘And I don’t hear you any more, I don’t hear you shuffling in the morning’, says Jolanda.
From a drawer, Carel Dolman gets the remote control he uses to switch his pacemaker on and off as needed. The machine was set up at the UMCG. The frequency, the voltage and the best combination of platinum points are established just by trial and error. If Carel’s lips start to droop, if he feels tingling, if his hand moves too much, or if his speech is slurred. ‘It was amazing’, remembers Jolanda, ‘how they turned it on and immediately you started to talk normally again.’
Carel Dolman is not cured, however. The Parkinson’s has not gone away. He still takes medicines, but fewer now. Nobody knows how long it will last, but he has a number of years before the frustrating tics return. And he’s about to return to work as a school teacher.