How we rewired my husband's brain to help stop his terrible pain after opioids ... trends now
A single moment was all it took for our world to be seismically changed for ever. In 2008, my husband, Simon — a relentlessly, even irritatingly, healthy 38-year-old musician and part-time construction worker — fell backwards off an unsecured second-storey scaffold on to a stone floor, suffering catastrophic injuries to his brain and spinal cord.
Rushed to hospital by air ambulance, the head neurosurgeon later told us that when Simon had arrived in his operating room he was ‘half way through death’s door’. Placed in a medically induced coma, his parents and sister joined me in rotating four-hour shifts at his bedside.
After three weeks, Simon defied expectations by waking from his comatose state.
Doctors had removed the bone on the left-hand side of his skull to make room for the swelling in his brain and, while we waited for the swelling to diminish, it was stored in the hospital freezer until it could be replaced.
That wasn’t all. Simon had severed his spinal cord roughly in line with the bottom of his ribcage — meaning he experienced no movement or sensation below his waist, and had no control over his bowels and bladder; his left arm was weaker than a newborn’s; he had no hearing in his right ear — and had trouble swallowing and sitting upright for more than 30 minutes.
Kara Stanley with her husband Simon, who in 2008 fell off an unsecured second-storey scaffold, suffering catastrophic injuries to his brain and spinal cord
At the time, Simon and I had been married for 17 years and our son, Eli, was 16. Our world had been shattered. It was immeasurably difficult to imagine picking up the pieces and re-assembling our fractured lives.
So it might shock you to hear that Simon’s paralysis was not the worst consequence of his accident.
In reality, the hardest thing was his pain. A chronic, constant, spasming pain that, even after a decade, saw him wail in agony through the night and made him reliant on opioids — specifically hydromorphone, generally only recommended for long-term use for pain caused by cancer.
Yet even with these potent painkillers, a simple touch of my hand or my head resting on his shoulder was often too much for him to bear. His broken nights and resulting fatigue severely limited his ability to work. Having dinner with friends was generally more of a commitment than we could make.
We both despaired. After one terrible bout of pain shot through his body, Simon told me: ‘When it’s this bad . . . It makes me think it’s nature’s way of saying I should never have survived my injuries.’
Simon is not alone. A conservative estimate suggests 20 per cent of the global population live with chronic pain.
Yet sadly, most people will be treated by physicians who do not have specialised training in pain medicine. The average number of hours dedicated to pain for the average medical student is just 13 in the UK.
Little wonder then that, while we eventually negotiated a kind of peace with the many permanent consequences of Simon’s injuries, we were lost when it came to addressing his pain. We felt locked in a soul-grinding cycle of failed interventions — from intense physiotherapy and acupuncture, to using a TENS machine diligently and three separate nerve blocks (where anaesthetic is injected into nerve roots to numb them).
When Simon's spinal cord was severed his nervous system began to adapt, becoming more reactive to any perceived threat
However, accepting the pain was unsolvable was equally complicated: surely a prerequisite of getting better was a belief you could get better.
So we set ourselves a task: a year-long experiment where we hoped to conquer Simon’s pain.
Everything was on the table: from more traditional medical interventions such as nerve ablation (where nerve cells in the lower spine are burned away), to essential oils and dietary changes. When I suggested this project in 2019, I knew Simon wasn’t keen. After more than 20 years of marriage, I could tell what he was thinking: ‘Your big plan will mean a boatload of work for me and a lot of flaky stuff like guided meditations and increasing our daily dose of fermented foods.’ But we had to try.
In the process, we found that his pain’s ‘cause’ was highly complex. Given the extent of his injuries, it’s reasonable Simon would be in some pain. When the accident first happened, we were hopeful that, as he continued to heal, it would fade.
For those first few months out of hospital, it seemed that hope was not unfounded. Back home, Simon had weekly physio sessions. Slowly, the ability to play guitar with his sleepy left hand returned. Sleeping ten hours every night, he woke every morning stronger than the day before.
Pain was an issue, but just one of many. Simon coped with it, aided by small doses of hydromorphone.
Then, a few weeks after we marked the first anniversary of Simon’s accident, a procedure at the podiatrist led to his right big toe developing the flesh-eating disease necrotising fasciitis, which was turbocharged by the antibiotic-resistant superbug MRSA. After three months of IV (or intravenous) antibiotic treatment for this infection, Simon’s pain suddenly escalated. While I was cooking a roast one Sunday, across the room, he cried out, a baffled wail that increased in pitch and intensity. His hips and lower back were racked with pain.
Urgent scans revealed nothing. When months later the infection resolved, no concrete medical problem existed for doctors to fix. But still the pain raged.
Our GP suggested a higher dose of hydromorphone, which helped, but only minimally. Simon took it at night, when his pain was worst. His dreams became hallucinatory. Convinced that painful electrical surges in his hips were related to various electrical devices, he would wake me, requesting I check his computer or stereo, believing their circuitry was shorting, causing his pain.
You might wonder how he could feel pain in his hips if he was paralysed from the waist down.
Doctors now know this type of pain is a potential outcome of spinal cord injuries. But it’s complicated because it’s a creation of arguably the most complex thing in the universe: the human brain.
Initially, Simon was affronted when I brought this basic maxim of current pain research to his attention, violently rejecting the idea that his pain was somehow imaginary.
But saying pain is a creation of the brain is not the same thing as saying it’s imaginary.
Instead, it means that pain is your nervous system — your brain, brainstem and spinal cord — alerting you that something is wrong. Different parts of your body are constantly sending alerts to your brain for interpretation. If your brain decides there’s a credible threat of harm, it will create pain. Real pain.
This is true even if your brain is being bombarded with faulty or inaccurate information.
Overloaded with danger signals — whether caused by excessive stress, prolonged fear or inflammation — the brain will amp up a pain response, even in the absence of actual threat.
So pain, for Simon, was no longer a symptom of an underlying physical problem, but had become the disease itself, the consequence of a damaged central nervous system wildly misfiring after being strained by so much
