When someone loses a body part to amputation, he or she may experience residual, aka “phantom,” limb sensation. It’s the feeling that the body part is still present — whether after a major limb amputation, surgical removal of a finger or even following a mastectomy. Although the body part is gone, leftover physical feelings are quite common and very real. While much remains to be learned about the science behind these phantom sensations, help is available now to quell the discomfort — so people should speak up if they’re having these symptoms.
Almost everyone experiences phantom sensations after an amputation, says Dr. Jack Tsao, a professor of neurology at the University of Tennessee Health Science Center in Memphis. Although outright phantom pain is less common than milder phantom sensations, between 85 and 95 percent of U.S. patients experience phantom pain at some stage during their lives after amputation, Tsao says.
Patients may complain that the phantom limb feels like it’s frozen into position. Or it could be a burning pain, electric shock-like sensation, uncomfortable itching or mild tingling. Tsao says a common description is, “It feels like my foot is in a boot that is one size too small” or “My hand is in a glove that’s too small.” Telescoping, another sensation some patients describe, is the feeling that the phantom limb is gradually receding and shrinking inward.
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It’s important to distinguish between the words pain and sensation when seeking treatment , says Linda Arslanian, director of rehabilitation services at Brigham and Women’s Hospital in Boston. Pain does plague certain patients, she says, but of the gamut of residual-limb sensations, many are inoffensive and some people may even welcome these feelings.
“It’s sometimes kind of pleasant — it reminds [people] of their limb,” says Arslanian, who is also a physical therapist. However, other patients may describe a shooting sensation in the phantom limb, Arslanian says, or tell her, “I can feel my toes moving.” She emphasizes that the experience of residual-limb sensation varies greatly among patients.
In additional to individual tolerance, the circumstances surrounding the amputation contribute to whether sensations are easily bearable or highly uncomfortable. The reason for the amputation — whether due to a medical condition like diabetes or trauma, say from the 2013 Boston Marathon bombing — can affect the type and severity of pain.
Similarly, whether the amputation is a planned procedure related to a disease like cancer versus emergency surgery after a crushing car accident affects the extent to which surgical techniques can minimize the impact of phantom limb pain. Much depends on the condition of surrounding nerves and blood vessels before surgery. With a diabetes-related amputation, for instance, phantom cold and cramping sensations may be related to poor circulation arising from the disease, and affecting the entire body.
The electric-like sensation some patients complain of at precise areas along the residual limb can stem from a surgical side effect called a neuroma, which involves scar tissue that forms around nerve endings at the incision site as it heals, Arslanian says. This hypersensitivity bothers some patients, she says, while it’s more a matter of interest or curiosity to others.
Body-Brain Confusion
The underlying mechanism of phantom limb pain boils down to this: “Each area of the body is [connected] to nerve pathways in the brain,” says Dr. Robert Bolash, a physician with the interventional pain-management group at Cleveland Clinic in Ohio. “As you remove a limb or a piece of the body, those pathways still stay there. And the brain gets confused a little bit about not getting input from that area at a certain time.”
That brain-body confusion can cause certain patients to feel ashamed. “Some people even find it embarrassing and they’re not willing to talk about it,” Bolash says. “Because they can look down and see that they don’t have a limb there. And nonetheless, they’re feeling sensation and perhaps pain in the limb. So you can imagine it’s psychologically distressing for them also.”
An element of grieving exists when people lose a part of their body, Bolash says. How they cope with that grief varies. For some, phantom limb sensations can be quite debilitating. “It can prevent people from even being able to participate in the physical rehabilitation,” he says. “So those are the people we don’t like to see regress and we get aggressive with the treatment.”
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Working With Mirrors
Wartimes tend to stimulate interest in phantom-limb pain research, spurring treatment advances. Tsao, who did active military duty for 14 years and is now a Navy reservist, was previously stationed at the Uniformed Services University of the Health Sciences in Bethesda, Maryland. “At the time of the Iraq surge, all of a sudden we had a lot of amputees,” he recalls.
To learn more, Tsao met with the chief of rehabilitation services at the former Walter Reed Army Medical Center, Dr. Paul Pasquina, and observed patients with amputations They were receiving less-than-successful treatment for phantom pain, using medications including opioid drugs. “Even on the strongest opiates, servicemen and women were complaining that their phantom pain was still unremitting,” Tsao says.
So, they became intrigued by earlier research they’d read on an approach called mirror therapy. “You put [the mirror] between the intact and the amputated limb,” Tsao explains. “You have the amputee look at the reflected image of the hand or the foot [giving the appearance that the limb hasn’t been amputated.] You then have them move their [intact] hand or foot around slowly while watching the movements in the mirror, and simultaneously moving the phantom limb in a similar manner.”
The USUHS/Walter Reed team conducted a small randomized study, starting in 2006, funded by a grant from Congress to the Military Amputee Research Program. One set of participants had access to the mirror with visual feedback from the reflection. In another group, researchers took away that feedback by covering the mirror. A third group of participants closed their eyes and tried to visualize and move the limb. Of the three methods, Tsao says, only the mirror was successful in reducing phantom pain.
For many patients in treatment, 15 minutes of daily mirror therapy for a month can eliminate phantom pain, Tsao says. “We think the mirror works because there’s some sort of visual-sensory-motor connection that is getting rewired by mirror therapy over time,” he explains. Ongoing research is revealing more about how the therapy works.
Moving Pain Away
Another method called peripheral nerve stimulation diminishes pain for some patients, Bolash says. Offered at Cleveland Clinic, the treatment involves an electrical device, permanently placed along the nerve that was cut during surgery, to send rapid-frequency currents to diminish phantom pain. The patient uses an external remote control to activate the device, or may opt to let it run continuously.
Medications, such as certain classes of antidepressants or antiepileptic agents, alone aren’t usually enough, Bolash says, although they may contribute to roughly 20- to 30-percent improvement in combination with other therapies. Physical therapy usually brings an “excellent” response, he says.
Physical therapy, exercise and immediate post-amputation care to smoothly shape the residual limb border help prevent or reduce frequent, intense or painful phantom sensations, Arslanian says. For example, regularly pumping muscles around the amputation site prevents swelling and other complications, while exercising the joints preserves range of motion.
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As people go through rehabilitation, Arslanian says, exercise, combined with efforts to shape what remains of the limb, not only reduces pain but helps promote a smoother transition to a prosthetic arm or leg. As time passes and people regain more function, phantom sensations tend to fade.
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Coping With Phantom Pain After Amputation originally appeared on usnews.com
