An estimated 80% of amputees suffer from an excruciating syndrome known as phantom limb pain. Unbelievably, the solution to a lifetime of suffering can be found in a simple household accessory
By Dene Mullen Photography by Sam Jam
Stephen Sumner has a habit of making people jump. Reclined in a brown leather armchair in Phnom Penh’s FCC, the Canadian is explaining the phenomenon of phantom limb pain when he suddenly lurches forward. “AAAAGH!” he screams as he grasps his prosthetic leg and jolts his head up, the veins in his neck bulging.
Everybody in the bar swivels. Silence descends. “Sorry, everything’s fine,” he assures the rubberneckers, waving an apologetic hand. Twenty seconds later he is placating a concerned waitress. “Don’t worry, we’re good, we’re happy,” he says to her, chuckling as she walks away.
He turns back to me. “When I imitate the phantom pain, like I just did, in front of other amputees, they get what I’m talking about. That’s when they all stare at me and there’s a look of recognition. They’re thinking, ‘Yeah, I get that.’”
Many patients that require leg or arm amputations experience a vivid feeling of the limb still being there. This ‘phantom limb’ is often mutilated or twisted into impossible shapes. Furthermore, when the amputation has occurred as a result of trauma (such as a traffic accident or landmine blast), it is estimated that 80% of amputees experience severe pain in their phantom that can last for years.
“If you do get it and you get it bad, it comes in a cyclical fashion,” explains Sumner. “You have no control, it’s like Tourette’s. It hits so hard and the pain is unimaginable. It’s like a lightning bolt to your foot. Sometimes a cycle can last for three or four days, and in those three or four days, you can’t be with your girlfriend, you can’t be in a restaurant, you can’t be in a public place, you can’t sleep. When you get a hit, suddenly you get anxious about when the next one is coming. And that anxiety brings it on.
It’s a vicious circle.”
A history of silence
It is a week after our meeting at the FCC, and Sumner is up to his old tricks again. “I lost my leg nine years ago. For the first four years, I was like… Aaaagh!” he screams, clutching his prosthesis, this time shocking a group of Cambodian amputees bolt upright at Kampong Speu Physical Rehabilitation Centre.
After further explanation of phantom limb pain, delivered through a translator, Sumner asks the question: “How many of you suffer from this?” They look around at each other. Slowly, hesitantly, all six amputees present raise a hand. Their sense of embarrassment is palpable.
“The problem with phantom limb pain is that if you don’t ask the patient, they will not tell you,” says Didier Cooreman, head of the International Committee of the Red Cross (ICRC)’s physical rehabilitation project in Cambodia. “They don’t talk about it. That’s why these workshops are so useful, especially coming from Stephen, who is a fellow amputee.”
The ICRC supports Cambodia’s Ministry of Social Affairs, Veterans and Youth Rehabilitation in running the Kampong Speu centre, as well as a larger facility in Battambang province. Last year it fitted 129 new patients with prostheses and 245 with orthoses. In the same period, the Cambodian Mine/UXO Victim Information System (CMVIS) reported 185 casualties, 43 of whom were killed and 24 of whom had limbs amputated.
“In the old days, people said [phantom pain sufferers] were crazy or that they were making it up. It’s actually none of those,” says Dr Eric Altschuler, an associate professor at Rutgers New Jersey Medical School’s department of physical medicine and rehabilitation. “Even though you cut the arm or the leg off, the brain is still there, and it’s the brain that controls the senses.”
Cooreman says that not wanting to be branded ‘crazy’ is one of the major reasons so many Cambodians suffer in silence.
“There is also what might be the only dark side of Buddhism, which is the karmic thing,” says Sumner. “In any village that I go to, a lot of these guys are pariahs. They’re stuck out back and a guy comes with rice once a day. There is a dark side to karma and these people are impugned for their amputism because of what they did in a previous life.”
On the road
Sumner lost his leg nine years ago after he was knocked off his motorbike by a speeding car in a hit-and-run incident in the Tuscany region of Italy. His left leg was amputated above the knee (‘AK’ in amputee parlance) and the subsequent phantom limb pain he suffered was ruining his life. That is, until he discovered mirror therapy, a treatment developed in 1995 by neuroscientist Vilayanur S. Ramachandran from the University of California, San Diego.
“Mirror therapy worked for me, and I desperately needed something to work, because I was going to kill myself,” says Sumner matter-of-factly. “That’s what I keep at the front of my mind when I’m pitching to people.”
When the brain sends commands down to an amputated leg, it wants a response, but gets nothing. “This makes the brain mad – it doesn’t understand what’s happening, which creates the phantom limb pain,” explains Sumner in layman’s terms.
The therapy requires an amputee to hold a mirror alongside their ‘normal’ arm or leg and move it. The reflection tricks the brain into seeing two functional legs, which allows it to receive the messages it craves, thus alleviating the pain.
Following his self-applied mirror therapy Sumner’s transformation was so complete, so miraculous, that he vowed to spread the word. This is why he can be found in Kampong Speu, explaining phantom pain and mirror therapy to a group of amputees and ICRC therapists. The room is crammed with apparatuses that help amputees regain crucial motor skills – a couple of slightly rusted exercise bikes, a circular trampette, a basketball hoop and balls – and it is soon filled by Sumner’s booming voice as he begins his presentation.
“Here’s my right leg,” he says, slapping it vigorously and repeatedly for dramatic effect, “which is perfectly good, although it’s not very pretty. But this leg works fine. I like it. A lot. The brain wants one just like that on the other side. By placing the mirror next to it, all of a sudden, I’ve fooled my brain, and now I have a perfectly good left leg. Because the brain wants the pain to go away, it will make it very easy. It sounds too simple, but it works.”
Neang Sinath, wearing a pink sandal decorated with dainty flowers on her brown prosthesis, listens intently. The 42-year-old lost her leg in 1994 in an artillery explosion. The unfathomable pain has been with her ever since.
“Nobody had told me about phantom pain before, so I didn’t understand what was happening to me,” she says. “The pain is not there all the time, but sometimes it hurts very much and it stops me from doing anything. It can make life very boring. If the pain goes away after mirror treatment, I will be very happy. With the pain gone, I can do anything I want to. It will make it easier to play with my children and do housework.”
This is Sumner’s second trip to Cambodia since he founded his donation-driven charitable organisation, Me and My Mirror. A keen cyclist, he delivers homemade mirrors and the accompanying therapy by bicycle, riding all over the country. Focusing mainly on the heavily mined northwest, this year’s trip lasted three months and Sumner estimates he handed out 350 mirrors to amputees, while his sessions with ICRC therapists provide even greater dissemination.
Twice on this trip, Sumner has been sent sprawling at high speeds after being struck by wing mirrors. On one occasion, his prosthesis was ripped off and thrown to the other side of the road. But if the journey is no walk in the park, sometimes the destination is even more traumatic.
“I’ve been in villages where the entire populace are amputees. Each individual has been touched by tragedy somehow,” Sumner says. “The definition of harrowing is the whole Samlot district in Battambang province – there’s just so much damage.”
A portrait of the addict
The history of medicine is littered with ill-advised cures for phantom limb pain, from hypnosis to brain surgery to serial amputations. The latter was a truly brutal mistreatment, whereby an amputee’s stump was ‘shaved’ back by an inch at a time, often resulting in increased agony through multiple phantom limbs.
However, perhaps the most dangerous treatment prescribed for phantom pain is drugs, particularly opioids. “People tried all sorts of drugs and maybe in some cases they work but in general they’re not so successful.
People can take drugs to the point of being comatose, but they don’t necessarily help the phantom pain,” says Altschuler, who is also a colleague of mirror therapy progenitor Dr Ramachandran.
Sumner’s blunter appraisal is particularly worrying in a country where strong drugs such as tramadol, oxycodone and vicodin are available over the counter. “I know hundreds of junkie amputees,” he says. “Opioids don’t do a single thing for neuropathic pain, but they keep prescribing them. So you’re still in agony, but now you’re a junkie. Nice combo, right?”
On the contrary, mirror therapy has proved widely successful, according to Altschuler.
“I want to stress that every patient is different, but mirror therapy’s main strength, everywhere in the world, is that it’s so effective,” he says over the phone from New York. “What’s also nice is that it’s relatively inexpensive. So it’s not like people are getting a second-class bargain. There is not a better treatment, no matter how much you spend.”
Sumner, of course, has first-hand experience of what he describes as the mirror therapy “miracle”, having suffered from phantom pain for four long years, before curing it in five weeks using the mirror.
“It’s worth remembering that it may have worked for me so well because I needed it to work,” he says. “But here you have the most complex organism in the universe, the human brain. Then you have one of the most common household implements on the planet, and that’s the solution to one of the most complex syndromes known to humankind. Neurology doesn’t quite understand phantom pain yet, but the mirror does.”
“Trading toadstools” – Victims of unexploded ordnance find new hope in funghi-farming
“Black water” – Brave volunteers are pushing their bodies to the limit as they prepare to search for ordnance in the Kingdom’s murky rivers
“And then there was one” – Given its extensive disabled population, why is Cambodia only supplying the 2012 Paralympic Games with a solitary competitor?
“Tools of terror” – In November last year, Myanmar officially became the only government in the world still actively laying landmines.