Would YOU GAMBLE on high-stakes surgery?
The risks can be fatal but the benefits lifechanging. As the agonising choices facing patients and surgeons are confronted in a powerful new BBC documentary
NoRMALLy, consultant counselling psychologist Colin McGuiness is the one listening and providing support to patients. But earlier this year, he felt in need of support himself.
Previously fit and healthy — he cycled and ran two or three times a week — he’d been told that without treatment, a worsening back problem would leave him paralysed from the chest down.
Colin, 65, first noticed mild symptoms in December last year.
‘When I tried to run, I couldn’t get my right leg to move when I wanted it to,’ he says. ‘It was as if someone had taken out the batteries on my right side.’
He put it down to lockdown and ‘old age’ but in February this year, his wife Jan, 67, a retired medical secretary, noticed that when he
walked, he threw out his left leg to compensate.
Colin, who specialises in posttraumatic stress disorder, had spent lockdown hunched in his back bedroom in Warminster, Wiltshire, peering into a screen to counsel patients. As well as continuing to see his existing clients via Zoom, he volunteered for a charity called Frontline 19, set up to provide psychological support to NHS staff.
‘I counselled intensive care nurses who’d seen more dying patients in one week than in their entire careers,’ he says. ‘It’s my job to absorb all that trauma and help people process those dreadful images, so it was a very tense time.’
Colin, who has two sons, Nick, 32, and Adam, 29, was convinced the problem was to do with the way he’d been sitting for work — back
hunched, legs crossed, a notepad balanced on one knee.
‘I thought I might need a bit of physio,’ he says. But when he saw his GP in late February, the doctor was concerned and referred him to an orthopaedic surgeon for more tests. ‘But he also mentioned motor neurone disease (MND) — Jane and I were so scared we both broke down outside the surgery,’ he recalls.
As Colin had private health insurance, he was able to see the specialist within a fortnight.
An MRI of his spine revealed that, thankfully, he didn’t have MND — the muscle weakness in his right side was caused by a disc that had slipped out from between the vertebrae.
Normally these discs, which act as shock absorbers for the spine, have a spongy interior — but Colin’s had become hardened, or calcified, and was now compressing his spinal
cord, causing numbness and a gradual weakening of his right leg.
The problem was the unusual position — most slipped discs occur in the lumbar or lower back: Colin’s was in the upper thoracic region of his spine at about the level of his lungs.
Without surgery to remove the disc it would continue to compress the spinal cord and he’d be paralysed from the chest down within months, losing bowel and bladder function.
But due to its position, surrounded by vital organs and vessels — operating carried enormous risks. Colin was told that few surgeons in the world would even attempt it.
‘The consultant I saw at my local hospital in mid-March said he’d done a few of these operations and “had very bad outcomes”, by which I assumed he meant death or paralysis, so he’d stopped doing them,’ says Colin. ‘He couldn’t think of anyone else who would do it either. I felt vulnerable and utterly devastated.’
There seemed little hope for Colin until a physiotherapist friend mentioned Rodney Laing, one of the world’s most eminent spinal surgeons, based at Addenbrookes Hospital in Cambridge — and, it emerged, the only one brave enough to take on his case.
T HE procedure features in a new series of BBC Two’s Surgeons: At The Edge of Life. In each episode both doctors and patients balance extraordinary risks — in Colin’s case the chance of paralysis — with possible, but not guaranteed benefits. Viewers can see surgeons stretched to their physical and emotional limits and patients, themselves pioneers, dealing with the terrifying spectre of the unknown.
For Colin, there was no choice. ‘If I didn’t have the operation, I’d be in a wheelchair anyway,’ he says.
‘I was losing more muscle tone in my right leg every day and beginning to lose function in my left leg.
‘By June, I couldn’t flex my right foot at all, it was like a
flipper. I was so scared, at one point I had a full-blown anxiety
attack so intense I thought I was going to die.
‘My son took me to A&E but there was nothing wrong with my heart — I was just terrified of what was happening to me.’
He had his first consultation with Mr Laing by Zoom and instantly felt more at ease.
‘He was incredibly down to earth,’ says Colin. ‘He just inspired confidence. When he told me he’d take my case on, my only question was: “When can you do it?”. Mr Laing
performs just two or three of these highly risky operations every year.’
Normally, disc surgery is approached through an incision in the back. Mr Laing spent hours honing his skills on cadavers, teaching himself how to approach a thoracic disc through the patient’s side, which means there is less risk of permanently damaging the spinal cord.
‘All surgeons need to be obsessive, but neurosurgeons more than others because there is no such thing as a straightforward spinal operation,’ says Mr Laing.
‘Because we operate so close to the spinal cord, which carries messages from the body to
the brain, they all carry significant risk.
‘Courage to attempt these comes from training and experience, learning from others and getting the right team together on the day.’
In an 11-hour operation on July 7, Mr Laing cut through Colin’s ribs and deflated his
lung, carefully manoeuvring through healthy tissue to reach the damaged disc.
It took him and his assistant
Jibin Francis, five hours just to reach Colin’s spine.
He spent the remaining six hours drilling a ‘trench’ around the disc before removing it in tiny slivers, working millimetres
from Colin’s spinal cord, where even the vibration of his drill could potentially cause damage and paralysis.
It is incredibly demanding physically and mentally.
‘Just as you’re getting tired, the stakes are getting higher,’ explains Mr Laing. After eight hours, his hands and arms ache and yet he knows he is always just a millimetre from ‘wrecking’ his patient.
He remembers the names of all the patients he has operated on
who ended up worse and acknowledges that without them, he would not have the experience he does today.
‘Much of surgery is about knowing when to operate and when not to,’ he says. ‘It is about weighing up the pros and cons; risks and benefits.
‘When things go wrong there is always something to learn. But I try to foresee all the possible difficulties — a very big
advantage of [a long career] is that you have mostly seen everything before.’
With this ahead of him,
Colin was ‘shaking and nauseous,’ the night before his operation.
‘But as soon as I got to the hospital, I felt completely calm.’
When he woke up he could feel his feet, a sign there was no nerve damage. ‘And that’s all that mattered,’ he says.
He is still in recovery: he’s had several falls — when, as he describes it, ‘the power goes off’, but in the past few weeks, he’s
felt almost back to normal with his walking and Mr Laing
expects his progress to continue.
‘A gift’, Colin says. ‘Which I am grateful for every single day.’
For patients with symptoms that make life, quite simply, unbearable, the determination to have treatment that only might help is understandable, even if the risks are terrifying. But it also means finding the specialist who can — and will — help.
As a little girl, Ekpemi Irune, a gifted head and neck surgeon, who later in the series operates on cancer survivor Nancie Raby, 75, used to flip through her uncle’s anatomy books, sketching the images of bones and tendons and sinews.
‘He was a thoracic surgeon and those textbooks were the reason I became intrigued by the structures on the inside of the body,’ she says.
Nancie, who has been married to Harry, 81, a Cambridgeshire farmer for 50 years, was diagnosed with oesophageal cancer two years ago and ‘sailed through’ 20 sessions of radiotherapy.
Her cancer was cured, but her voice box, at the top of her oesophagus, was badly damaged, and her oesophagus, which takes food and liquid to the stomach, was so constricted by scar tissue that she could no longer swallow even fluids.
A self-confessed foodie and keen cook, she missed eating with Harry terribly — particularly roast potatoes and her beloved puddings — and she’d lost around two stone in weight.
When she was referred to Miss Irune for surgery, she had been feeding herself liquid nutrition through a tube or PEG [percutaneous endoscopic gastrostomy] directly into her stomach for 18 months.
SHE was offered the choice of continuing like this, or having this very major and highly risky surgery. Nancie’s is a hugely complex procedure, involving head and neck and plastic surgery. In order to repair her oesophagus, her damaged larynx — the voice box — needed to be removed, leaving a gap at the top of her airway as well as a hole in the front of her oesophagus.
To reconstruct the area so Nancie could swallow again, Miss Irune performed a myotomy — a series of shallow cuts to the muscle around the oesophagus, allowing it to expand.
A team of plastic surgeons then harvested skin from her
forearm, together with millimetre-thin veins and arteries which were then replumbed into her neck to keep the new flap of skin alive.
This now covers the front of her oesophagus, making it wider. Another piece of skin taken from Nancie’s chest was sewn on top, to ensure the reconstruction is watertight.
‘It’s a very beautiful sight!’ Miss Irune declares during filming, as she peers into the abyss of Nancie’s neck and throat.
It’s a difficult operation to watch, let alone endure and there were multiple risks for Nancie — including heart attack, stroke, bleeding and infection as well as complications connected to the sheer length of the anaesthetic in someone of her age — surgery lasted a total of eight hours.
And recovery will be long: removing Nancie’s larynx means her airway is no longer connected to her mouth so she now breathes through a stoma (hole) Miss Irune created in her trachea or windpipe at the base of her neck.
But six weeks after surgery Nancie ate her first meal in nearly two years — a sandwich. Since then, she hasn’t looked back. A voice valve fitted into the stoma in her trachea will in a few months allow her to speak again, but for now, she communicates through a series of whiteboards situated in every room of the house.
Nancie is naturally stoic and doesn’t dwell on the physical and emotional impact of what she’s been through. When I ask her what made her go ahead with such long, painful and risky surgery, she writes on her board: ‘I just wanted my life back.’
And has it all been worth it? She nods and smiles. She’s now enjoying simple dinners with Harry, Sunday lunch with their friends and the thing she looked forward to most, salted caramel Magnums with her five grandchildren.
F OR the surgeons working at the edge of life, the happiness and gratitude of their patients is what drives them to tackle the next exhausting procedure. Never far from Miss Irune’s mind is ‘the responsibility to bring muchloved patients safely back to their families. Life is precious and short’, she says.
‘To restore a patient’s quality of life is unique.’
SURGEONS: At The edge of Life, BBC 2, on Thursdays at 9pm, starting this week.