Facing an amputation is one of the most daunting experiences that a person can have. Whether a result of sudden trauma or disease, the loss of part or all of a limb is something that none of us ever expects to encounter. Feelings of helplessness and hopelessness tend to engulf the individual as well as his or her family and friends. Although the latter two can offer vital emotional support, nothing will help to clear away the fear arising from uncertainty and restore a modicum of hope as much as in-depth conversations with the surgeon and with other members of the team who will see the process of rehabilitation through to its conclusion.

For this process to be successful, the prospective amputee must insist on being a full member of the rehabilitation team, even prior to surgery. Initially, this is accomplished by becoming as well informed as possible about the amputation and its consequences. Many questions will occur to the person and significant others prior to the surgery. In the role of patient, the person has a right to have all of these questions answered promptly in a clear manner free of professional jargon.

Some of the points that should be discussed include:

1. The absolute need for amputation

You should be completely satisfied as to the necessity for removal of one of your limbs. The surgeon should be willing to review with you and others that you designate all pertinent information that has led to this decision, including the results of vascular studies. Because of the irreversible nature of amputation, you may feel more comfortable if you obtain a second opinion from a surgeon completely independent of the first. It is definitely to your advantage to become a well-informed consumer in this matter.

2. The level of amputation

The surgeon should be able to provide a clear reason why a certain level is chosen, especially if it is above the knee or elbow, because of the great difference in rehabilitation potential when the knee or elbow is lost. Ask what tests have been done or could be done to support the necessity for a high-level amputation. Again, a second opinion from an unrelated surgeon will also address this issue.

3. The sequence of events surrounding the amputation with a proposed "timetable"

Ask your surgeon to explain the significant milestones you should reach during your recovery. How soon will you start using a walker or crutches after surgery? How long will you be in the hospital? Will your health plan provide sufficient time in therapy to ensure that you will be able to care for yourself at home after discharge from the hospital prior to prosthetic fitting? Will you be transferred to a rehabilitation facility for this purpose? How often will the surgeon monitor your progress to determine your readiness for prosthetic fitting or will this be delegated to another physician? When should you expect to receive a prosthesis? What arrangement will be made for adequate gait training with the prosthesis? How often should you return for routine follow-up review of your status?

4. Meeting the other members of the rehabilitation team

As mentioned before, the amputee is the most important member of the team that will guide him or her to maximum potential. Ask your surgeon to arrange individual interviews with the coordinating rehabilitation nurse and the physical therapist or occupational therapist as appropriate. In the case of a lower-limb amputation, the physical therapist can evaluate your potential for walking with a prosthesis. There are many aspects to this including the presence of the knee, condition of the remaining lower limb and your general health and vitality. The occupational therapist can outline the function to be expected from use of an upper-limb prosthesis at the amputation level required. The prosthetist who will construct and fit your prosthetic limb will present options in design, cosmesis and cost as well as suggest components appropriate for your activity level, vocation and avocations. The social worker or psychologist can provide help in coping with the emotional issues associated with the inevitable change in body image. In addition, a trained peer counselor, who has successfully passed through rehabilitation following a similar amputation, will provide living proof that a satisfactory lifestyle can be achieved. Ideally, if circumstances permit, these interviews should take place preoperatively or very early in the rehabilitation process.

5. Preserving the remaining lower limb

The surgeon should be questioned regarding measures that can be taken to prevent loss of the remaining foot and leg. Although statistical studies indicate that amputation of a lower limb for disease is followed by loss of the other within a few years, they do not take into account the preventive measures that can be taken. In the case of vascular disease, smoking cessation and prescribed exercise and diet may slow the process and encourage the formation of sufficient new (collateral) vessels to ensure indefinite maintenance of limb circulation. In vascular disease, the incident that led directly to amputation may have been a minor injury to the foot that failed to heal. This can be prevented in the remaining foot by the consistent use of carefully-fitted shoes with a roomy toe box and custom-molded insoles that can be prescribed by your surgeon.

In the case of diabetes, there are also effective measures that can be taken to protect the remaining foot. Because most amputations in people with diabetes result from injury to a foot with decreased sensation, protection of the foot by well-fitted shoes is primary. Well-fitted shoes with appropriate inserts, if consistently worn, have been shown to be effective in preventing amputations in diabetic persons with specific risk factors. In fact, they have been so effective that the Medicare program provides partial reimbursement for them to all qualifying persons with diabetes on its rolls. Of course, barefoot walking and even the occasional use of other shoe designs is strongly discouraged. Other effective preventive measures include smoking cessation and tight long-term control of blood sugars. Although daily blood sugar measurements are of great importance in the effective management of diabetes, the most reliable measure of long-term success is the quarterly level of glycohemoglobin, which reveals the average daily blood sugar over the previous three months. It should approximate 6 percent, which is equivalent to a safe average daily blood sugar level of 120 milligrams per deciliter of blood.

Getting complete, understandable answers to these and any other questions that occur to you is essential in building the trusting relationship necessary between the person about to undergo a major life-changing surgery and those who provide the surgical and rehabilitative care. The bond that develops will lead to the best possible outcome given the individual circumstances of each case. It is a two-way street requiring both an assertive, inquiring patient and caring, skilled team members who listen closely and respond in an open manner.

About the Author:

John Bowker, MD, is professor emeritus, Department of Orthopaedics and Rehab, University of Miami School of Medicine, Jackson Memorial Rehab Center.

© Amputee Coalition of America. Local reproduction for use by ACA constituents is permitted as long as this copyright information is included. Organizations or individuals wishing to reprint this article in other publications, including other World Wide Web sites must contact the Amputee Coalition of America for permission to do so.