Pain affects all amputees. According to a survey by the Limb Loss Research and Statistics Program in collaboration with the Amputee Coalition of America (ACA), 91% of amputees have some type of pain, and 83% experience pain in two or more areas.
The methods of treating pain, however, are as varied as the people who suffer from it. O&P practitioners, along with other allied health professionals, can offer their knowledge and experience to those who need it most.
Defining pain
Amputees face a plethora of pain sources from the time of amputation, ranging from postsurgical pain to phantom pain to chronic pain. Practitioners should complete a thorough pain assessment to determine the source of the pain.
The first type of pain is acute, postsurgical pain. Amputation causes trauma — albeit controlled trauma — to the nerves and tissues, and the body needs to heal. Over time, this pain gradually will subside and cause fewer problems for the amputee.
Another source of pain may stem from the original reason for the amputation. Traumatic injury tends to cause more pain than vascular diseases because of the body’s response to trauma, Christina Skoski, MD, told O&P Business News. In addition, those with vascular issues, such as people with diabetes, are likely to lose sensation in that limb, which initially may have necessitated the amputation.
“Someone with an amputation is not just an amputee,” Skoski said. “There also is the rest of the body that goes along [with that].”
Contrary to assumption, the pain that keeps amputees from participating in their regular activities and from working is back pain, not pain resulting from their amputations, according to Skoski, a retired clinical anesthesiologist and a member of the medical advisory committee of the ACA. This is because everyday life with an amputation adds strain on other body parts. After a length of time in the hospital, a person might develop bedsores. A lower limb amputee, for example, may put abnormal stress on the opposite leg, creating an abnormal gait. When using crutches, an amputee may experience pain in the wrists, elbows and shoulders.
Another cause of pain for amputees may come from the prostheses rubbing against neuromas, which are masses formed at the severed nerve endings after amputation. Neuromas can be difficult to treat because of the healing process of the nerves: when a nerve is cut, a neuroma forms to heal the nerve ending. Cutting off the neuroma often leads to the formation of another.
Edema, or swelling, also causes discomfort for amputees. Injury or trauma to the limb, such as the amputation surgery, often results in swelling. Edema is also the result of a normal amount of fluids accumulated at a body part that no longer exists.
Looking for phantoms
According to Sanjiv Kaul, DO, medical director of Jim Thorpe Rehab Center at Comanche County Memorial Hospital in Lawton, Okla., the most common type of pain found in amputees is phantom pain.
“That is a difficult area to treat,” he said. “We also try the same modalities that we use for general pain management for phantom pain.”
Before beginning any sort of treatment, practitioners should distinguish phantom pain from phantom sensation. Phantom sensation can be described as a pins-and-needles feeling, buzzing, cramping, warmth or cold — all annoying feelings, but not necessarily painful.
Amputees feel phantom sensation because the surgery to remove the limb did not also remove the nerve pathway from the brain. For this reason, the brain continues to send signals to the limb, even though it is no longer there.
“I always say that it is a natural part of becoming an amputee,” Skoski said. “You feel [the amputated limb] in your brain.”
Just as each amputee may feel different types of pain, each amputee can suffer from varying intensities of pain.
“The degree of pain experienced by any individual person is just as unique as the individual person,” said Harry Layton, CPO, LPO, owner/practitioner of Lawton Brace & Limb Co. Inc. in Lawton, Okla.
Layton has found that many of his patients who experience chronic pain have a hypersensitivity to those feelings. The cycle begins, he said, when patients become aware of painful sensations or become nervous about the increasing intensity of their current pain. At that point the nervous system goes on alert and the pain feeds on itself.
“A significant number of patients experience a tremendous amount of pain before amputation, [which creates] a scenario where chronic pain will end up developing,” he said.
After surgery or trauma, tissue damage causes pain in the limb. Once sufficient healing time has passed, however, and the patient still feels pain, there is a chance that the sensitivity of the pain receptors has been damaged.
“The longer that pain is in the body without controlling it, the greater the likelihood that the body’s neurological system will create a pain loop where normal sensation becomes hypersensitive,” Layton said. “It lays the groundwork for developing chronic pain.”
(For more information on phantom pain, see “Living With the Ghost: An Update on Phantom Limb Pain,” in the Feb. 1, 2007 issue of O&P Business News.)
Finding the monster under the bed
Layton likens pain management to a search for the monster hiding under the bed.
Children can lie awake at night, terrified of what is lurking under their beds. But when their parents arrive, armed with flashlights for a thorough hunt, the monster shrinks down and cannot be found.
“The more aggressively people try to empower themselves to deal with chronic pain, the better they do in spite of it, to the point where they get the upper hand,” Layton said.
The most critical aspect of managing pain for amputees is making a commitment to persistent attention to, and care of, their residual limbs.
“If you can get a handle on the pain before it gets too bad, or to prevent it or block the sensations that are going to the brain, you stand a better chance of decreasing long-term pain,” Skoski said.
A new technique for pain management in the operating room is pre-emptive analgesia, she said. In this method, anesthesiologists will try a number of procedures to stop pain before it begins, including injecting local anesthetics at the incision site, doing a nerve block at the knee or hip level, or placing a catheter with a local anesthetic near the nerve sheaths. These offensive strategies prevent the patient from feeling pain not only at the time, but in the long-term as well.
Immediately after surgery, most amputees will receive narcotics to control acute postoperative pain. For chronic pain, physicians instead may prescribe antidepressants or anticonvulsant medications. Both work in the brain to counteract pain receptors. Antidepressants quiet the brain’s neurotransmitters to reduce anxiety and sleep disturbances; anticonvulsants stop pain both at the site and in the brain.
Some other techniques to reduce pain involve reducing the residual limb’s swelling. To control edema, amputees can use a shrinker or a compression sock.
Applying gentle pressure desensitizes the residual limb. Skoski recommends placing a towel at the end of the residual limb and pulling, tapping the residual limb, and light exercising. Layton emphasizes the importance of massaging the limb.
“I recommend that they become friends with their body again,” Layton said. “Starting out with some gentle massage, and working up to more aggressive stimulation of the tissue, generally goes a long way toward reducing the discomfort that they have.”
Requesting help
The pain management specialty has risen from anesthesia and has grown to include anesthesiologists, neurologists and physiatrists. Now there are pain specialists all over the United States. Much of this niche field, however, deals with chronic pain regarding back pain, hip pain, sciatica and neck pain.
“When it comes to phantom pain, we are still in the minority,” Skoski said.
For this reason, prosthetists need to be prepared to offer a variety of avenues for controlling amputee pain. First, prosthetists must provide amputees with well-fitting prostheses to ensure that there is no rubbing or irritation. In addition, O&P practitioners should develop working relationships with allied health professionals in their communities so that their patients receive comprehensive, multidisciplinary care.
According to Skoski, the standard of care is a combination of therapies, medical treatments, lifestyle changes and alternative treatments. Layton recommends a biopsychosocial treatment paradigm, treating patients not only with medications, but also the psychological and social aspects of amputation to help them control their pain. See “Stocking the Arsenal” on page 22.
Kaul’s physiatry practice takes a multidisciplinary pain approach, enlisting the help of nurses, physical and occupational therapists, prosthetists, psychologists, and psychiatrists.
“In general, we have seen good results,” he said. “It is giving [the patients] control over their pain, and a lot of times the pain has taken over their lives. They know they have a team of professionals they can rely on.”
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Addressing psychological issues
For some amputees, overcoming chronic pain literally requires head-over-feet thinking.
As a hemipelvectomy amputee for more than 45 years, Skoski knows how difficult it can be to stop defeatist thoughts.
“When you are lying there in bed in pain, it is hard to envision that you are going to have a future, and that this pain will go away,” she said. “For the vast majority of people, it does.”
She also tells practitioners to encourage their patients to take responsibility for their own bodies.
“It is easy to [watch] a below-knee amputee sitting in a wheelchair, complaining ‘My life is over.’ Well, if you have got one leg, you can stand up.”
It is for this reason that trying some of the alternative therapies — stress reduction, self hypnosis, biofeedback, psychotherapy, decatastrophizing, cognitive and behavioral intervention, and social support — is so critical to amputees’ recovery.
While physical activity has been proven as the best treatment for depression, participating in outside activities also can help amputees forget their pain. Even going to work can give amputees a sense of accomplishment.
When employing biopsychosocial treatments, amputees are forced to change their thoughts and feelings about their situations. In Layton’s experience, however, not all amputees are ready to take responsibility for their medical conditions. To prevent any negative reactions, he develops trusting relationships with the patients in need of this approach, and then presents research that has shown the benefits of additional treatment methods.
Building on this relationship, Layton tries to empathize with his patients to better understand how to treat them.
“The biggest thing that person needs is just a little understanding and compassion,” he said. “The ability to empathize and offer that compassionate understanding without any judgment whatsoever … to me that is what makes a good practitioner.”
Educating patients
O&P practitioners armed with the largest arsenal of pain treatments cannot help patients if they are not ready to help themselves. An integral part of treating amputees is educating them about the treatment and their options for care.
Skoski uses her experiences as both an anesthesiologist and an amputee to assist other amputees.
“When I was going through it, I just kept asking my surgeon, ‘This is going to get better right? Tell me this is going to get better,’” she said. “He absolutely guaranteed me.”
His confidence in her recovery prevented her anxiety and stress from engulfing her life.
Amputees also should be aware of their own pain triggers, as they are different for everyone. Examples are edema, natural endorphins, climate, mental and physical stress, inactivity, diet, illness, and bodily functions like menstrual cycle. If amputees are conscious of these pain causes, they can learn to avoid them and minimize their discomfort.
Skoski cites a study by psychologist Richard Sherman, PhD, in which he studied 68 distinct treatments for treating phantom pain, from hot and cold compresses to invasive surgeries.
“Everything worked for at least one patient, but not one treatment worked for everyone,” Skoski said. “That is why you have to try a little of this and a little of that.”
For more information:
- www.amputee-coalition.org
- www.amputee-coalition.org/people-speak-out.pdf
- Hoydicz J. Living with the ghost: An update on phantom limb pain. O&P Business News. 2007;16(3):20-26. The article is available online at www.oandpbiznews.com/200702a/cover_story.asp.
Stephanie Z. Pavlou is a staff writer for O&P Business News.
