Various treatment options can offer relief
Twenty-one-year-old Jamie Diaferia lay in his hospital bed, paralyzed with pain. Concerned, the doctor asked him where it hurt. Diaferia pointed to the bottom of his right leg.
"Jamie," the doctor said, "there's nothing there."
Diaferia, who was born without a right foot, just had five inches--from his ankle bone up--amputated to stop fluid-filled cysts from forming on his leg and to accommodate a slimmer prosthesis.
"It was very disorienting...I pointed to three or four inches below where my leg [had been]. I didn't understand the reasons for the pain," he says. Diaferia's pain was treated with morphine and other painkillers, and eventually the pain dulled to a throb. After two weeks, his pain was manageable, and he returned to work.
What Diaferia experienced was phantom limb pain. Characterized by squeezing, cramping, burning, aching or sharp stabbing pains, phantom pain may develop immediately after an injury, or weeks, months, even years, after the injury.1 The pain is usually worse after the amputation and diminishes in most people after a few weeks or months, says Todd Kuiken, MD, PhD.
Each year, about 100,000 amputations occur in the United States, leaving many at risk for phantom limb experiences.1 Almost all of the amputee population may experience phantom limb sensations, says Dr. Kuiken, director of amputee services at the Rehabilitation Institute of Chicago.
"[People with amputations] may feel like the leg is still there, feel toes moving, numbness, tingling and pins and needles," he says. These sensations can be in any amputated part. Even women who've had mastectomies may feel as if the breast is still there, Dr. Kuiken says.
In addition to phantom sensations, some patients may feel that the phantom limb is in an uncomfortable or bad position, says Dr. Kuiken. He cites the case of a woman whose arm was severely damaged in a boating accident. When they pulled her out of the water, he says, her injured arm was placed over her chest. Later, after the arm was amputated, she felt as if the arm was still across her chest.
The phenomenon of phantom sen-sations/pain has been known by medical professionals for centuries. As far back as 1551, medical and fictional literature has made references to phantom pain. Ambroise Pare, a 16th century military surgeon, wrote that patients feel pain in the amputated part long after the amputation. And in Herman Melville's Moby Dick, Captain Ahab talks of phantom sensation with the ship's carpenter.3
History's accounts of phantom sensations/pain were more phenomenal in nature, rather than scientific. An 1871 account of phantom limb sensation was called "a post-amputation sensory ghost," and was once termed a hallucination in the American Journal of Psychiatry.3
Fortunately, medical professionals now know phantom limb effects are real, not hallucinations. And despite the annoyance of some phantom sensations, most people with amputations can live with these feelings, Dr. Kuiken says.
But when the sensations become uncomfortable and increasingly painful, people need treatment. "In a fair number of patients, the pain becomes problematic and severe enough that it interferes with their function or sleep or significantly diminishes their quality of life," he says.
In recent years, many theories have tried to explain phantom pain, but none have gained universal acceptance. Some believe pain associated with a phantom limb is directly related to the pain experienced before the amputation.3 Another theory holds that the brain has a map of the body, called a homunculus, and that each part in the homunculus is wired to its corresponding portion of the real body. When a body part is missing, the corresponding brain part can't handle the loss. So, the brain rewires its circuitry to make up for the signals it's no longer receiving from the missing limb.
The rewiring may occur two ways. First, nerve impulses in the sensory cortex may be sent down untraveled pathways. Or second, neurons in the cortex may invade the missing limb's territory because sensations are no longer received from that location.4
Others believe phantom pain isn't a single syndrome, but a result of various causes.3 For instance, phantom pain increases with a patient's stress level, says Dr. Kuiken. As stress and anxiety increase, so does pain. In addition, changes in air pressure and temperature, inactivity and periodic illness can change the level of pain.5
Like phantom pain's many causes, treatment options are varied. Clinicians have tried a long list of treatments to relieve phantom pain, including multiple medicines, physical modalities, TENS, acupuncture and even some surgical techniques, says Dr. Kuiken.
To treat his patients, Dr. Kuiken initially uses desensitization techniques consisting of massage, a friction rub (rubbing the limb with a coarse cloth) and tapping the residual limb. These techniques offer pain-free stimulation that seem to diminish the pain, similar to the relief people feel when they rub a sore spot, explains Dr. Kuiken. "Sometimes we'll get control of the pain this way, but I often find that once I get the patient into a prosthesis and they start to walk, the pain decreases," he says.
Because a patient's stress level correlates with his pain level, Dr. Kuiken also uses stress relaxation techniques, biofeedback and imagery to reduce stress. Biofeedback teaches patients how to relax muscles though visual examples of how muscles look when they're tense. With imagery, patients are encouraged to picture a peaceful scene, which often promotes relaxation.
But when the pain is still significant, despite the desensitization techniques, Dr. Kuiken will try medication. He stresses that it's up to patients to decide when the pain is too great.
Two classes of medicine are often used, neuroleptics or anti-seizure medication and tricyclic antidepressants, which are most medically tested. He frequently starts with small doses of antidepressants, and slowly works his way up. Antidepressants may have some side effects, such as sleepiness, dry mouth and slight weight gain. "The sleepiness can actually be helpful because the pain is often worse at night when the patient doesn't have many distractions," he says.
The medications must be taken regularly, not on an as-needed basis. Until they take effect, he may use anti-anxiety medications to control stress levels. (The antidepressant and anti-seizure medicines usually take two to three weeks to work). Most of the time, the pain is controlled with the medication and desensitization techniques, Dr. Kuiken says.
Some patients may turn to alternative treatments, such as acupuncture. "Pain relief is usually the No. 1 reason patients come into the office," says T. Aristotle Economou, who has a doctorate in chiropractic medicine and works at the Beverly Hills Alternative Health Center in Beverly Hills, Calif. If there's phantom pain in the right side, Dr. Economou will use acupuncture points on the opposite limb. By treating the contra-lateral side, he is activating acupuncture meridians in the phantom limb, he says.
Dr. Economou also uses a noninvasive soft laser acupuncture system in place of traditional needle acupuncture. The infrared laser helps block pain enzymes and activates the synthesis of endorphin enzymes by depositing photons into cells and transmitting this information to the central nervous system. Dr. Economou also uses TENS units--electrodes are placed on various acupuncture points on the body--and hand pressure at specific pressure points to relieve pain of the phantom limb. The most common points are at the knees, elbows, wrists and ankles. Depending on the amputation, he teaches his patients where to apply pressure so they can administer the technique at home. Dr. Economou also uses the laser acupuncture if patients have a great deal of scaring at the amputation site. He finds this helps reduce phantom pain.
Remember, phantom pain is real, and doesn't exist solely in the patient's mind, Dr. Kuiken emphasizes. Acknowledging that this is a real phenomenon can go a long way toward helping patients cope with the stress and anxiety of the condition. Treatment intervention can help restore quality of life so people can return to the activities they enjoy.*
For references, call Joanna Vishio, (800) 355-5627, ext. 207