This Man is Using a Simple Visual Trick to Cure Phantom Limb Pain
Amputees are often tortured by phantom pain from missing limbs. While scientists puzzle over the condition, Stephen Sumner delivers a simple treatment that works.
One June evening in 2004, Stephen Sumner was riding a scooter down a quiet road in Tuscany when a motorist crashed into him and sent him flying. He broke his collarbone and ribs, and his arm and leg were crushed. The doctors saved his arm, but his left leg had to be amputated above the knee. As Sumner, now 54, recuperated, he knew he’d lost the limb: He received gruesome visual reminders when the stump was cleaned. Yet still, he felt the leg. It began in his dreams.
In a particularly vivid one, he was lying on his back on a wooden cart, his left leg visible till just above the knee. The rest of the leg was hanging through a gap in the slats, swinging in time to the lurching of the cart.
During his third week in the hospital, Sumner began to feel pain, though pain turns out to be a wholly inadequate word for what he describes: excruciatingly clenched toes, jolts that he likens to being shocked by a cattle prod, writhing so violent that his head banged against the sides of the hospital bed. A doctor said his body was adjusting and the aches would go away.
Back in his native Canada, Sumner underwent physiotherapy and began wearing a prosthetic leg. The pain returned at intervals. “Everything was good,” he says. “But my leg that’s not there was killing me.”
The sensation of a missing limb is felt by nearly everyone who’s had a limb removed. Somewhere from 50 percent to 80 percent of all amputees complain of phantom limb pain. Doctors used to think the pain was from damaged nerves near the stump. They tried to shorten the stump, which sometimes gave relief but seldom for long. Then, in the early 1990s, neuroscientist V. S. Ramachandran, PhD, and colleagues at the University of California, San Diego, conducted simple experiments that changed the understanding of phantom limbs. When the researchers stroked the left side of the face of a young man who had recently lost his left arm, he felt sensations not only on his face but also on his phantom hand.
Scientists knew that the brain contains a virtual map of the body corresponding to sensory inputs from different parts. The face’s representation on this map is adjacent to the hand’s. Could the young man’s phantom twinges be the result of sensory inputs from his face “invading” the brain region that mapped to his missing hand?
Brain imaging confirmed this. Other researchers found that these rewired inputs might activate neural pain pathways for the missing hand. Or when signals sent to move the missing hand didn’t lead to any visual or sensory confirmation of the movement, this dissonance was perceived as pain.
Ramachandran and his group wondered if “seeing” the phantom limb move might help. They built a mirror box—a simple contraption that hid the stump while allowing a reflection of the intact limb to be superimposed over the phantom limb. If the amputee moved the intact and phantom limbs in sync, the brain could “see” the phantom limb move. The first amputee to try it felt immediate relief. Other users also found they could manage phantom pain.
Sumner tried to will his pain away: “Optimism. Mind over matter. I thought I could beat it.” But it kept getting worse. “I tried to drink it to death, which was costly and messy in every sense, plus totally ineffective.”
In 2008, Sumner was working as a property manager in Baja California, Mexico, when he had a particularly agonizing bout of pain. Looking online for treatments, he decided to try mirror therapy. He drove two and a half hours to the nearest Home Depot to buy a mirror. He tried it in the parking lot. In five minutes, the pain was gone.
Sumner used the mirror for two weeks, then stopped because the pain had not returned. About a year and a half later, the pain came back. This time, he used the treatment for a full five weeks. He hasn’t had phantom pain for more than four years.
“It’s gone now,” he says. “It’s gone because I treated myself with a mirror.”
In the fall of 2010, it struck Sumner that mirror therapy might be his calling. He’d go where there were amputees in pain and teach them how to use a mirror. Cambodia was his first destination because it had an inordinately high number of amputees, and it was small and flat, which was important because Sumner was planning to bicycle with his mirrors.
And so, on the first day of 2014, we meet at the entrance to the run-down Paris Hotel in the city of Battambang. The Battambang province of northwest Cambodia is one of the most heavily mined regions in one of the most heavily mined countries in the world.
Sumner grins as he walks toward me with his hand outstretched. He’s a big, strong man who might pass as Steven Seagal if he had darker hair and was capable of a sterner manner.
His prosthetic knee is visible below the hem of his shorts, without the covering that makes prostheses look like natural legs. This stands out even in a country with so many amputees. It’s partly by design: The success of his work depends on other “amps”—as he affectionately calls them—accepting him as one of their own. Cycling, too, is part of earning trust: “It impresses people that I roll up on a bicycle.”
The Red Cross center at Battambang fits prostheses and conducts rehab for free. When Sumner visited, the manager told him none of its amputees had phantom pain. According to Sumner, that’s a common response: “Nobody wants to be thought crazy.”
Sumner asked to speak to the amputees. Through a translator, he told them about his accident and how he had cured himself. “How many of you have phantom limb pain?” he asked. Thirty-seven out of 44 people raised their hands.
Sumner conducted a workshop for the center’s therapists. He left behind mirrors for amps to keep using. In two trips to Cambodia, Sumner has distributed around 600 mirrors of his own design, made for him in Phnom Penh.
Patrick Brown/Panos PicturesOne morning, a volunteer drives us to Ratanak Mondol, a community populated entirely by amputees and their families. We pass signs marking areas where mines have been cleared and others with grisly warnings of the consequences of playing with a mine. The Cambodian and Vietnamese armies and the Khmer Rouge are estimated among them to have laid around ten million mines in the country. Only around half have been recovered. Land mines and unexploded ordnance killed about 20,000 people and injured 44,000 more from 1979 to 2011 in Cambodia.
Despite public information drives and de-mining programs, farmers still step on mines in the fields. In Ratanak Mondol, a tractor detonated an antitank mine in 2012, killing seven members of a family.
Each family here has a patch of land to farm and a bamboo-and-wood stilt house. From beneath one house, four children ages four to six spill out into the yard. The eldest scissors a bicycle perilously round the house, with a screeching younger sibling on the rear saddle. A bright heap of corncobs dries in the sun. The children’s grandfather, in his 50s, is shoveling. Only when he comes closer does it become evident that one of his legs is prosthetic.
The community’s schoolteacher is a woman around 30. Her class has 16 children from ages three to six. One of the teacher’s legs is prosthetic, and she learns from Sumner how to use a mirror.
When he teaches mirror therapy, Sumner points to his head: “You have a commander here that controls the body.” Many of the people he treats have been soldiers; they are familiar with talk of commanders and maps. “The commander has a map of the whole body. When the map doesn’t match the body, the commander panics and you feel pain. This mirror tricks the commander into thinking the leg still exists, so the pain goes away.”
Not everyone is convinced. Tamar Makin, an associate professor at the University of Oxford in England, published a paper in 2013 that questioned the neurological processes behind mirror therapy. She believes that the relief many amputees feel is probably because of the placebo effect. While several controlled trials of mirror therapy have shown it works better than a placebo, a 2011 meta-analysis found some studies to be of poor quality and could not reach a definite conclusion.
“Patients are complicated, and nothing works for everybody,” says Eric Altschuler, MD, of Temple University School of Medicine and a collaborator of Ramachandran’s. In his experience, there is more than one kind of phantom pain, a distinction often not taken into account in trials. Even so, Altschuler adds, “the mirror is the only effective treatment.”
Whatever the science, there’s something marvelously loopy about a one-legged man on a bicycle riding into villages with a bunch of mirrors. I set out with Sumner early one morning after a cup of thick, strong coffee sweetened with condensed milk.
We ride to a rehabilitation workshop run almost entirely by amputees, who make wheelchairs, crutches, walkers, and prostheses. Seven or eight people whom Sumner treated on his previous visit have gathered. “For how many of you did the pain disappear?” he asks. Almost all present raise their hands, and there’s clapping.
Update: Today, Stephen Sumner still works to raise money so he can bring mirror therapy to regions with large populations of amputees. Shortly after this trip to Cambodia, he spent time in Laos; he hopes to raise enough funds to visit Myanmar, Crimea, and Ukraine soon. Sumner’s work with the Red Cross in Southeast Asia has influenced therapists to begin using mirrors to help treat the wounded in Gaza and Syria. To learn more about Sumner’s mission, visit meandmymirror.org.
Mosaic (July 8, 2014), Copyright © 2014 by Mosaic, mosaicscience.com.