When his wife handed him a mirror, David didn't realize she was pioneering a cutting-edge therapy that had never been used on his condition. He didn't know that after spending years in the most pain imaginable and nearly losing his life, relief would come as an illusion. But when a captivating story about itching prompted Beth to try a simple experiment, David's condition improved and brain science progressed.
David suffers from anesthesia dolorosa, or AD, a painful affliction often caused by the hands of a well-intentioned surgeon. For David, it resulted from a 1999 surgery for trigeminal neuralgia, an irritation of the trigeminal nerve. Running from the brain to the eye and branching off to the upper and lower jaw, the nerve effectively wires facial sensations.
Following the surgery, David developed numbness and then pain — the pain of AD.
"For me, it was mostly like a cluster of crescendo kinds of pains. You could feel it coming on, then boom, you get this pain that goes through your eye or jaw that feels like you are being stabbed," he explained.
AD is often referred to as a "most dreaded condition." There is no effective treatment. While medications are the first line for attacking the pain, they are often ineffective. And for David, they were more of a pain than they were worth.
In fact, the drugs (pain medications and stimulants to counteract the doping effect) left David's heart compromised. He went to the emergency room several times with pericarditis — an inflammation of the lining of the heart — so bad that it had seriously lowered his blood pressure and then stopped his heart altogether.
"The cardiologist said, 'You may never take stimulants again,'" recalled Beth, who talks in carefully worded sentences with thoughtful demeanor with poignant insights. "Basically (saying), 'you are going to kill yourself.' And while on the pain medications alone, David did not have many waking hours. He was really disabled."
While David recovered in the hospital, Beth nervously cleaned out her e-mail inbox. In a message from her brother-in-law, she came across "The Itch," an article in The New Yorker by Harvard neurologist Atul Gawande. The article was also about nerve damage and numbness — and mirrors. "The Itch" describes how using mirrors to give some people with "phantom limb pain" — feelings from a limb that has been amputated — the illusion that the missing limb is present and functional can sometimes obliterate the pain.
Beth made the connection that the numbness, burning and electric bolt sensations were just that, sensations experienced in the brain and not the nerves in the face responding to something directly. It was a breakthrough. She realized that David's loss of sensation on the left side of his face was like a lost limb.
"Beth is a very astute, careful observer," said neurologist V.S. Ramachandran, director of the Center for Brain and Cognition at the University of California, San Diego. Ramachandran first wrote about mirror therapy in 1996. Since then, it has been used to effectively treat phantom limb pain and been carried over to help stroke victims and address other pain disorders.
Mirror therapy depends on the principal that pain becomes wired into the brain and intricately linked with the visual system. At the end of "The Itch," Gawande consults with Ramachandran, who speculates that having the patient with the itch look into a non-reversed image in the mirror while being touched by someone else might do the trick.
When she read "The Itch," Beth and David — both of them poets, writers and instructors — were living in upstate New York on the Canadian border, nowhere near a therapist or doctor who specialized in mirror therapy. So the day David left the hospital, the couple went to a thrift store, paid 25 cents for a hand-held mirror and effectively rubbed away the pain, trying different massage techniques on the right side of his face — the right side, not his afflicted left side — to see what works. With 15-minute rubbing sessions three or four times a day, David has been able to wean himself off medication completely.
"I'm just a man in search of a mirror," said David, holding a hand-held mirror up at a slightly less than 90-degree angle to a larger wall mirror. The small mirror shows David his "true image," not a reversed one, as a single mirror would do. It creates the illusion — and the sensation — that when Beth massages the healthy side of the face, the injured side is being touched. The sensation in fact is coming from the good/right side of the face, and David knows which side he's really seeing, but the visual perception overrides the facts, and his pain fades.
Scientists believe that the illusion tricks the brain's visual system into remapping the body's image, essentially resetting the system. Since much of memory, including pain memory, corresponds with visual feedback, the optical cues along with the sensory sensation from the unaffected side provide the voilà effect.
In his book Phantoms in the Brain, Ramachandran notes that people who undergo mirror therapy often notice an almost immediate relief. For some, after a few weeks with the mirror, the pain is gone forever. Others keep the mirror close by for a quick fix. Since David has experienced so many types of therapies that provided no lasting relief, the current success doesn't seem to be wishful thinking.
David is the first AD patient to benefit from mirror therapy. He and Beth blog about the experience, and his case has gained recognition from pain and brain science experts, as well as The New Yorker.
"This is a promising start," Ramachandran said. "On the other hand, it needs to be studied systematically. The vision is kicking in. We have to learn to harness that in the best possible manner." He explained that getting clinicians to use the therapy is key, and ultimately this non-surgical, non-pharmacological therapy may circumvent more extreme treatments.
More sweeping yet is the change in view regarding pain origin and the possibility that treatment eliciting the eyes may carry over to more common pain problems.
Although the pain is significantly diminished, David is not completely pain-free and the couple continue to navigate the burgeoning pain management field, adding his own fragments of information.
Reflecting on how the experience has changed his own views, David said, "It closes the door for one kind of perception I would consider mainstream and opens another door that, most of the time, is a strange one to walk through — but I don't have the choice."
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