By William B. Samuels, MSW
It is incredibly difficult for anyone to imagine what it is like to have an amputation or “to lose a limb.” Every part of a person’s life is affected. It is often a struggle to heal from this loss.
Even still, many people with limb loss are living quite normal lives. Many have successful careers, and are beginning and raising families. Many children with limb loss do well in school, develop positive attitudes about themselves, and are involved in all kinds of activities, from sports to dance to fine arts.
And, many in the Limb Loss Community are finding ways to “give back” to the community. One such opportunity is being a “peer visitor.” Peer visitors are people who have experienced limb loss who help other people who are facing or who have had amputations.
Here are some common questions and answers about limb loss:
Q. What happens if a person is going to have an amputation? How can they and their family be prepared?
A. If a person is going to have an amputation, it is very important to be informed. Asking questions and getting information is critical for the patient as well as for the people who will help him or her. Arranging for a peer visitor through the Amputation Coalition of America (toll free 1-888-267-5669), (TTY: 865-525-4512) will get this process started. Ask questions from everyone on the limb loss care team.
A. The limb loss care team is a combination of all professionals (health care and non-health care) who will provide services for a person with limb loss. Social workers are an important part of the team. It also includes doctors, nurses, prosthetists (people who make artificial limbs), physical and occupational therapists, job coaches, government agencies, attorneys, and others.
A. Unfortunately, movies and television often scare us with pictures of people having “amputations.” This is also used for political purposes. Most amputations, however, are performed in order to save lives. Recently the media has begun to recognize the human worth in people, regardless of their physical or mental abilities. Today, amputation is not as scary as it was just 20 years ago. (The Americans with Disabilities Act of 1990 has done a great deal to open doors for people with limb loss.)
A. Phantom pain, or phantom limb sensation, is the feeling that the amputated limb is still connected to the body. The person feel different sensations (from a tingling sensation to actual pain) in the missing limb. This is not uncommon, but it does not affect everyone. New pain management techniques have been developed to control phantom pain. These include non-medicine techniques.
A. Again, each situation is different. However, some people get a cast on their residual limb (it is no longer called a “stump”) with a temporary prosthesis while they are still in the hospital. It is not uncommon for this to occur during surgery, as long as there are not extenuating circumstances. It is important to choose a prosthetist and to arrange for a consultation if possible. The prosthetist can then, with the patient’s consent, speak directly with the doctor.
A. According to a very recent study by the CDC (U.S. Centers for Disease Control and Prevention) about 1.9 million Americans live without a hand, arm, foot, or leg. That is about 1 in 200 people.
A. Many people with amputations (people with limb loss) are not necessarily easy to pick out, particularly if they are wearing a prosthesis (artificial limb). Don’t expect to see them restricted to their homes, or in institutions. You would really be surprised who around you is an amputee.
A. There are many reasons for “surgical” amputations (amputations performed in surgery). The most common include disease (like uncontrolled diabetes, vascular disease, and certain kinds of cancer), trauma (including motor vehicle accidents, work related injuries, and combat related injuries), and birth defects (also known as “congenital limb loss” where a child is born without one or more limbs).
A. Limb loss is present in every part of the population: Adults and children, men and women, people of all races — it does not “play favorites.” The people who are at the highest risk for amputation, however, are people who do not have access to quality health care. (Source: Connections, published by the Amputee Coalition of America (ACA) National Limb Loss Information Center.)
A. As mentioned earlier, social workers are part of the limb loss care team. Hospital social workers can facilitate communication between the patient (and patient’s family), physicians, hospital staff, and other health care professionals outside the hospital. In the role of discharge planning, social workers can help arrange for safe discharge after hospitalization, whether directly home, to a physical rehab, or to another destination.
Clinical social workers can talk with, and listen to, people affected by limb loss. Caregiver support is a very important role of social workers. Social workers are educators, not only for the limb loss community, but also for the general community. Finally, social workers act as advocates to help people with limb loss obtain needed services, and to remove that prevent people with limb loss from enjoying the rights, and the privileges, to which all people are entitled.