Imagine having an unbearable itch that you absolutely can't scratch, or a muscle pain you cannot simply knead away. Losing a limb is devastating enough, both physically and mentally, but one of the hardest parts of adjusting to an amputation can be the distracting and often painful sensations from nerves that are no longer even there.
Whether they lose a limb as a result of a traumatic injury or disease, about 90 per cent of amputees experience sensations that seem to come from the amputated portion of the limb, according to research conducted by Dr. Jack W. Tsao with the department of neurology at Uniformed Services University of the Health Sciences (USU) in Bethesda, MD.
This sensory echo of the former limb is referred to as the phantom and the feelings coming from it are called phantom sensations. The phantom usually feels as though it is the same size and shape as the amputated portion of the limb.
Phantom sensations are normally not painful and should not be confused with phantom pain, which is more intense.
A recent report commissioned by St. John's Rehab Hospital in Toronto says there were 4,256 acute care amputation procedures in Ontario in 2004-2005. Residual limb and phantom pain occurred in 85 per cent of all amputee patients, and 29 per cent of amputees had depressive symptoms.
According to Statistics Canada, diabetes is the leading cause of amputation in Canada.
Researchers are not exactly sure why phantom pain occurs. According to War Amps Canada, "Pain 'memories' and pain 'gate' theories are among the most recent possible explanations, indicating that whole 'body mapping' exists in the brain. Even when a piece of the body no longer exists, the 'body map' remains intact and phantom sensation or pain can result when the brain sends ever more persistent messages to limbs not there."
Sometimes the pains go away after the injury has fully healed. But a few amputees report that the severity of phantom pain does not decrease after the stump of the limb has healed, but rather it persists for life.
Tony Maglietta, 53, of Stouffville, Ont., is a bilateral amputee. He lost both legs in an accident involving his Harley Davidson motorcycle and a 27-ton transport truck while traveling in Europe in 1996. Maglietta has undergone 25 surgeries since that accident. All of his rehab took place at St. John's Rehab Hospital Toronto, a facility dedicated to specialized rehabilitation, which has an amputee program.
Phantom pain "happens when using my prosthetic legs - if I stand for a long period of time, my nerve endings act up," he says. "It feels like someone is using a cattle prod on my stumps; it throws my whole body into shudders. I try to relieve the pain by lying on my back and then bang my stumps up and down. Sometimes hot baths and hot water helps."
Phantom pain can strike anyone
Phantom pain is not restricted to adult amputees.
"Certainly children can have phantom limb sensations and phantom pain, and it can continue for many years," says Dr. Allen Finley, professor of anesthesia and psychology at Dalhousie University, and director of the Centre for Pediatric Pain Research in Halifax. "Often it is not severe, but in some cases it may be."
It's also not limited to missing limbs — it can affect any part of the body.
In women, for example, phantom breast pain can happen after mastectomy for the same reasons phantom pains happen after limb amputations. The brain continues to send signals to nerves in the breast area that were cut during surgery, even though the breast is no longer there.
"Sometimes I get a sharp pain where my former breasts and nipples were, as if they were still there," Karen Morris, 47, of Guelph, Ont., says. "It happens sometimes when I am running or pass by a freezer in a grocery store. When I actually touch the scars, I cannot feel anything. The pain lasts for a short period of time."
Treatment: Mind over matter
Dr. R. Norman Harden, director of the Center for Pain Studies at the Rehabilitation Institute of Chicago and associate professor at the Northwestern University department of physical medicine and rehabilitation (Addison chair in pain studies), says there are various treatment options for phantom pain.
"We use a comprehensive, multidisciplinary approach that uses psychotherapy, biofeedback, physical and occupational therapy to their maximum potential," he says. "This is done on a daily basis as an outpatient service. The length of treatment varies depending on the patient's severity of pain and until results are reached. This program teaches people how to live with their pain and get on with life."
'The state of 'evidence-based medicine' in post-amputation pain is paltry and embarrassing.'— Dr. R. Norman Harden
It has been suggested that depression can increase phantom pain.
"Probably, but not proven," Dr. Hardin says. "Our anecdotal evidence suggests that this is the case, as it probably is in all chronic pain states. The state of 'evidence-based medicine' in post-amputation pain is paltry and embarrassing."
Dr. Finley says there are programs specifically for children.
"We would assess a child with phantom pain in our multidisciplinary Pediatric Complex Pain Clinic, where we bring the skills of a physician, an advanced practice nurse — a clinical nurse specialist — a pediatric physiotherapist and a clinical psychologist together to provide the best combination of management approaches. Treatments might involve medications, physical treatments [such as] desensitization, acupuncture, and psychological methods [such as] relaxation, guided imagery."
Mirror and imagery therapy
Some treatments are aimed at training the brain to recognize that the limb is no longer there.
"That phantom limb pain may be induced by a conflict between visual feedback and one's own perception of the amputated limb," Tsao suggests.
Tsao conducted a trial using mirror and imagery therapy in patients who have had a foot or leg amputated. Twenty-two patients at Walter Reed Army Medical Center in Washington, D.C., were assigned to one of three groups: One that viewed a reflective image of themselves in a mirror (mirror group); one that viewed a covered mirror; and one that was trained in mental visualization.
In the mirror group, "Patients watched the reflected image of their intact foot in a mirror while they moved both feet simultaneously. Obviously, amputees can't move their missing foot, but they can move their phantom foot," Tsao said.
Patients who used a covered mirror performed the same movements but the mirror was covered so they could not see their remaining limb moving.
The third group imagined movements; subjects closed their eyes and mentally pictured moving the phantom foot.
The study found that mirror therapy reduced phantom limb pain in patients who had undergone amputation of the lower limbs. Such pain was not reduced by either covered mirror or mental visualization treatments. Eighteen patients completed the study (six in each group). After one month of treatment, Tsao says, 100 per cent of the members in the mirror group reported less phantom pain, while only 17 per cent in the covered-mirror group reported a pain decrease and 50 per cent reported worsening pain. In the mental visualization group, 67 per cent reported worsening pain.
These results suggest that mirror therapy may be helpful in alleviating phantom pain in lower limbs.
"We do a four-week treatment regimen to start with — 15 minutes a day, five days a week," when using the mirror box for the treatment of phantom pain, Tsao says.
Tsao said they don't know why it works for some and not others in alleviating pain. "I think that there are probably several causes of phantom pain. We're still trying to determine who is most likely to benefit from mirror therapy and what type of pain is best treated with the therapy."
For many amputees, the answer is to try various treatments until they find one that works for them. And that often involves dealing with an amputation's effect on the mind as well as the body.
Bill Nixon, 66, of Hamilton, had his right leg amputated above the knee in 1996 due to vascular disease. "In early 1996, I experienced a massive collapse of the veins in the lower leg. Because the pain was unbearable, the surgeon admitted me to the hospital and an emergency bypass was performed. This last-ditch effort was unsuccessful. The only recourse now open to me was amputation. In August, I underwent a below-knee amputation."
He said that all seemed to go well, but during a routine examination four weeks later, the orthopedic surgeon noted that the incisions were not healing normally. Various things were tried, all to no avail, and he underwent more surgery to remove his leg above the knee.
'The worst thing to deal with was the psychological acceptance of myself as part of the community.'— Bill Nixon, amputee
Nixon says he had to cope with the physical healing of the amputation, followed by rehabilitation, and then adapting to life as an amputee with a prosthesis. He says that the hardest thing to deal with throughout the process was post-amputee depression.
"I was left on my own following the surgery. I had to wait three months before I began rehab therapy at an amputee rehab program, [at] Hamilton Health Sciences. The worst thing to deal with was the psychological acceptance of myself as part of the community."
Once he made the "emotional and spiritual decisions" necessary to get through the depression and find his place in society again, he decided to help others facing similar challenges. Nixon volunteers one day a week at the rehabilitation resource centre at Hamilton Health Sciences, where he reaches out to people who have experienced limb loss.
"My phantom pains are very rare and not really intense. I can honestly say that I have more purpose and contentment today than I ever had in the past," Nixon says. "It has been proven to me again and again that those of us who experience amputation can find a new, enriched life. Yes, a life that may be changed, but nonetheless, enlightened.… By enlightenment, I mean a new way of looking at life. With a disability, I have an appreciation of those things that I can do, not those things that I can't."