Questions to Ask Your Surgeon and Rehabilitation Team

Questions to Ask Your Surgeon and Rehabilitation Team

What Should I Expect?

Amputation. It’s something no one ever hopes to discuss with a doctor. But, unfortunately, there are more than 1.28 million people with limb loss living in the United States, and more than 100,000 major amputations are performed annually. Many patients say that in today’s high-tech age, they thought amputations were a thing of the past. I wish it were so. People lose limbs because of injury, disease, infection, chronic wounds and dysfunction. Even in a world of space travel and high-tech marvels, amputation and life after limb loss are a reality for a great many people.

Amputation is reconstruction and rehabilitation! Arms, legs, hands and feet are unique and wonderful parts of our bodies that allow us to interact intimately with our environment. Loss of part or all of a limb forever changes how we move, touch, work and play. But amputation is not a failure and never should be looked upon as such. The amputation site becomes the interface with the world by itself or in conjunction with prosthetic devices that are designed to try to replace the missing limb.

Surgeons must strive toward two primary goals, both of which are critical to the success of the amputation procedure. The first goal is to remove the diseased, damaged or dysfunctional part of the body. The second goal is reconstruction of the remaining part of the limb in a way that will promote wound healing and create the best residual limb possible. To be effective, the surgeon must understand surgical principles as well as all aspects of healing, rehabilitation, residual limb physiology and the nature of prosthetic limbs. The surgeon must also answer the patient’s questions as clearly as possible.

Amputation, recovery and rehabilitation are part of a “team” process involving doctors, nurses, therapists, prosthetists and, most importantly, the individual facing surgery. This individual needs to be as well informed as possible about the procedure, recovery, rehabilitation and life after amputation. All members of the team benefit from the wisdom and insights of other team members, but the head of the team must be the patient.

Is it an emergency?

When it comes to amputation, the time frame for consultation, consideration and decision-making can range from the immediate to years. In cases of trauma, the limb is sometimes lost at the scene of the accident. At other times, the person is unconscious and the decision to amputate a limb may have to be made rapidly to save his or her life. Perhaps a family member must decide. If no family is present, the decision may fall to healthcare professionals.

In other cases, severe infection has set in, and the infection is making the individual very sick. In medical terms, sepsis is occurring. The infection is spreading up the limb and through the bloodstream. Sepsis causes incredible stress on the heart, lungs and circulation, and people die from it if not treated. Treatment can include appropriate antibiotics, surgery to drain or remove infected tissue, and intensive support of the heart, lungs and circulatory system. This process is difficult because the healthcare team may be pushing for surgery to save the patient’s life, while the patient wants time to consult with family and friends.

Fortunately, true emergencies are rare. Most often there is time for discussion, the presentation of options and decision-making. Frequently, a person may face a difficult choice between limb salvage and amputation. At times, salvage can be the best answer and can result in a good outcome; at other times, the outcome may be unpredictable. Unfortunately, some salvage attempts lead to years of struggling and suffering with a limb that is no longer capable of functioning efficiently or without causing pain. In some situations, the need for amputation is clear, but the individual just needs a day or two to consult with family and to become mentally prepared. In these cases, patients should ask their surgeon if the need to amputate is truly an emergency or if the decision can safely be put off for a day or two. If it’s safe to wait, the surgeon should consider the request and give the patient the requested time.

Should an amputation be done?

When time and circumstances permit, the physician must explain plainly why injury or disease has significantly limited the person’s options. In a case of severe trauma, if the person is conscious, I will ask whether he or she has seen the injured limb. Often, this helps in decision-making. The person might say, “Yeah, doc, I saw it. It’s really bad,” and he or she might understand the difficult choice to be made. In cases of chronic conditions, such as diabetes, ulcerations or osteomyelitis (bone infection), the process is different. At these times, the individual has to weigh the chances of healing the current ulcer or infection, the chances of the foot staying healed, and the probability that the residual limb will still be functional.

The doctor should explain the nature of the injury or condition and whether it is technically possible to save the affected limb. Most of the time, we can save the limb, and it’s wise to do so. But predicting the outcome of salvage is not always easy. While it is our natural instinct to want to save every severely injured limb, there are times when this can actually put the person at increased risk of complications.

Many people may not be aware of how difficult it can be to live with a salvaged limb. They might have heard about the wonders of surgical reattachment of limbs and that badly injured limbs are now routinely saved. But limb salvage and rehabilitation can be a long, difficult and painful process. Salvage can involve not just one, but several surgeries, and it might mean sacrificing other parts of the body for bone grafts, skin grafts or muscle flaps. Finally, salvage does not necessarily mean “as good as new.” Almost always, salvage means limitations. Sometimes those limitations can be a bigger burden to manage than an amputation. Knowing when not to save a limb is a difficult choice, but an important one. The patient should discuss with his or her surgeon whether salvage is wise or whether amputation might be more appropriate.

Should the patient seek a second opinion? If time permits, I believe it’s wise to do so. Amputation is permanent. Seeking the opinions and advice of other physicians, nurses, prosthetists and people with limb loss can be beneficial. People may mistakenly think they’re not allowed to go to an amputee support group until after they’ve lost a limb. Actually, this can be the best place to gain insights into aspects of decision-making, surgery, the rehabilitation process, and life with limb loss. Patients who are interested should ask their healthcare provider for information about support groups or call the Amputee Coalition toll-free (888/267-5669) to find a support group near them.

What is meant by amputation level?

The level refers to where on the body the amputation will occur; i.e., transtibular (below-knee or BK), transfemoral (above-knee or AK), transradial (below-elbow or BE), or transhumeral (above-elbow or AE). Disarticulation refers to the process of removing a limb between joint surfaces, such as the knee, hip, elbow or shoulder.

Level selection and decision-making in amputation surgery are not easy. Surgeons try to balance the chance of successful healing with preserving function. We know that higher-level amputations have a better chance of healing, but we also know that the rehabilitation is more difficult and that the result can mean less function. Whenever possible, we do everything we can to preserve as much as possible, especially the elbow or the knee joint. Joints are vitally important for motion, power and leverage.

There are major differences between a transtibial amputation, a knee disarticulation and a transfemoral amputation, but the difference between a medium and a short transtibial procedure is not necessarily so dramatic. Occasionally, the longer transtibial amputation might have less function. At these times, clinical and biomechanical evidence suggests that we should be as or more concerned about the optimal use of soft tissue as we are about skeletal length. Any amputation involves complex interactions between bone, functional muscles, nerves and skin.

Over time, surgeons have learned that certain amputation levels tend to function better than others, and the site of amputation almost always tends to be higher than the patient expects. It’s natural to want to save as much skeletal structure as possible, but it’s more important to choose a site that will allow the creation of bone shape, muscle and soft tissue padding, and a residual limb with the optimal interface with prosthetic devices. It can be far wiser to choose a higher level of amputation if it will improve the chances of healing and returning to activity. For example, in a case of foot trauma, it might be better to choose a higher amputation level if there’s a significant risk of damage to the padding of the foot or scarring. In cases of cancer, choosing a level may impact the possibility of the tumor recurring.

The surgeon should explain the complexities of reconstructing a residual limb that has the highest chance of healing and rehabilitation. Again, this often means removing more than the person expects. Bone may need to be shortened to gain optimal soft tissue for padding to protect the end of the residual limb and for it to best interact with a prosthesis. The patient should ask the surgeon to explain the particular advantages and disadvantages of different amputation levels and why a particular amputation level has been recommended.

What about pain?

Discussions about pain should include the type of anesthesia to be used during the operation, the delivery method of medication in the days immediately after surgery, the medications to be used in the recovery process, and a plan to stop the medication. Many people expect their hospital stay to be like those portrayed in the movies where patients yell, “Nurse!” whenever they want a shot. But recent studies have shown that people frequently report more effective pain management and choose to use less medication when they’re able to administer their own pain medicine with a push-button, patient-controlled device.

The patient and his or her team should also discuss the phenomena referred to as “phantom sensation” and “phantom pain.” Phantom sensation is the feeling that all or part of a missing limb is still intact. This occurrence is quite common for many people with limb loss. Most, however, say they do not find it bothersome. Phantom pain is typically episodic, burst-like pain in the missing part of the limb. More than 80 to 90 percent of people with limb loss have some episodes of phantom pain. Fortunately, less than 10 to 20 percent describe this as extremely bothersome. Even when phantom pain is difficult, many have found unique ways of managing it. Patients who have phantom pain should ask their healthcare providers about management and coping techniques.

It has been hypothesized that the use of certain anesthetics during surgery might have a long-term benefit of minimizing phantom pain. The theory is that we can influence pain memory by spinal or epidural anesthesia to block the pain pathways. While this sounds intriguing, recent scientific research has been mixed and not as supportive as the initial studies. After being an early believer, I am not currently convinced that the type of anesthesia used has a long-term effect on phantom pain. In my opinion, the use of general anesthesia or epidural anesthesia remains a personal choice.

Who are these people and what are they doing in my room?

Physiatrists, prosthetists, physical therapists, counselors and peer visitors are all vitally important in presurgery, recovery and rehabilitation. While some surgeons still coordinate the rehabilitative efforts of their patients, today a physiatrist is usually the medical doctor who prescribes and coordinates this care. The physician often works closely with the rehabilitative nurse to prescribe treatment and devices and supervises the efforts of the prosthetist and physical therapist. Often he or she can also assist in obtaining educational and emotional support from counselors or peer visitors. The patient should know the identity of the primary physician who is coordinating his or her care.

When time permits, patients should get a recommendation to interview prospective prosthetists. They should choose their prosthetist carefully. During the first year following surgery, a new amputee spends a great deal of time with the prosthetist. The amputated limb changes dramatically during this year, and using a prosthesis helps these changes to occur properly. However, a prosthesis that is fit three months after surgery will simply not fit several months later. The residual limb will change, and patients should plan for these changes as their amputation heals and matures. Patients should ask their prosthetist the following questions: How will adjustments be made? When might a new socket be needed? How many visits might be required? What will be covered by insurance and what might I have to pay for?

The same goes for the physical therapist.The patient should ask whether the physical therapist is experienced in working with amputees, what will be done at the therapy sessions, and what is to be done at home between sessions. With the help of the physical therapist, the patient should establish realistic goals and milestones for rehabilitation.

Finally, the patient should ask about support groups and peer-visitation programs. These programs give patients the opportunity to talk with another person with limb loss and to get to know someone else who has “been there.” The Amputee Coalition has a network of support groups, peer visitor services and other information that can be helpful with these matters.

What can I expect during my recovery?

The first year following amputation surgery is, quite frankly, rough. There are dramatic changes in the shape and size of the residual limb, and a lot of work and “fine tuning” is needed to recondition muscles and relearn activities, balance and coordination. Contact with the prosthetist and the physical therapist can be more frequent than expected. Therefore, geographic location should definitely be taken into account when choosing a prosthetist and therapist. It is important to consider travel time, especially during this time of change.

Patients will want to know whether their prosthesis will be fairly standard or whether, because of unique circumstances, it will be more complex or difficult to fit. Occasionally, referral to an advanced prosthetics specialist may be indicated, and other assistive devices, such as crutches or a cane, might be necessary. Later, when visits will likely be less frequent, geographic location may not be as great a concern.

Visits with a physical therapist are fairly frequent for six months following surgery. Here, too, choosing someone who is nearby is important. Patients should ask about the physical therapy stages, including mobility, injury prevention, reconditioning, postoperative and interim devices, and more definitive prosthetic devices. They should also ask what level of function can be expected and what types of activities can reasonably be worked toward.

We live in a high-tech age. Many of us have seen marvelous prosthetic devices used by athletes in the Paralympics, on television, and in the movies. It’s natural for a person to want a prosthesis with the latest and greatest high-technology components. But a specialized running leg is simply not the best leg when first learning to walk. It is easy to become sidetracked with the bells and whistles and miss out on the basics. During the first year, the best technology is the most appropriate technology. Patients should ask members of their healthcare team about appropriate technology and devices that will facilitate rehabilitation, especially in the early stages. Later, as function improves and needs and skills change, a more complex device may be appropriate. Patients should learn about technology, but also maintain a bit of skepticism. If there was one perfect solution, there would not be so many different approaches and devices. What works wonderfully for one person might not be as successful for another, even with a similar amputation level.

How can I protect my other limbs?

Patients should ask their doctor about measures that can be taken to preserve the health and vitality of their remaining limbs. In cases of vascular disease and diabetes, statistics indicate that people who have had one leg amputated are, unfortunately, at risk of losing the other. In cases of trauma or tumors, there is also data to suggest that the unaffected limb will undergo increased wear and tear over the years. So, what can patients do to preserve their remaining limbs? First, if patients smoke, they should stop, and if they don’t exercise, they should start. Exercise is important for everyone and can be tailored to meet anyone’s capabilities, limitations and situation. Proper protection and stretching of the back, neck and the remaining limbs are vital. Your physical therapist can help you develop a good exercise plan. Patients with diabetes should be especially careful about protecting their feet. They should wear properly fitted shoes that allow adequate room for the toes, and they should not walk barefoot. They should also work with a podiatrist, a doctor who specializes in feet. A good diet that provides proper nutrition is also essential, and patients should do their best to control their cholesterol.

A chronic condition like vascular disease or diabetes does not simply go away. Amputation does not change the underlying disease; it removes a diseased or damaged limb. The diabetes or vascular disease is not really cured; rather, it remains a part of the amputee’s life. He or she is still the same person as before, but now there’s a different dimension to his or her life. Controlling their blood glucose level has been shown to minimize future complications for people with diabetes. Managing their glucose is an ongoing process, so they should keep working on it. Doctors, nurses, prosthetists, podiatrists, therapists and people with limb loss can work together to maximize their possibilities.

How can I work best with my healthcare team?

The essence of success is teamwork with a foundation built on mutual respect. Healthcare professionals should realize that the new amputee will have a great many questions and concerns to be addressed before and after the procedure. Extra effort should be made to answer these questions or to refer the person to the best source for answers.

It is equally important for individuals to have realistic expectations for the different healthcare workers’ time and expertise. The answers to many questions may be available through different team members. Perhaps some questions about medications would best be taken to a pharmacist. A prosthetist or physiatrist may have the answers about the patient’s artificial limb. The podiatrist may best answer questions about foot care. The nature of medical care in the United States has led to more specialization because there is just too much information for any one person to master. Unfortunately, this means different providers for all the different aspects of healthcare. Patients must, therefore, be skilled at gathering information from many different sources, not just from one person. Managing multiple providers and various differences in style can be a challenge. Patients should ask who is available to help coordinate and supervise the different aspects of their care and take an active role in keeping the different providers aware of all their issues because it does not happen automatically.

“The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don’t play together the club won’t be worth a dime.” – Babe Ruth, baseball legend

Relationships may be sabotaged by unrealistic demands on all sides. But these soured relationships can be avoided by taking just a few steps. Patients should make the best use of their doctor’s time as well as their own. They should prepare a written list of questions before an appointment, and they should listen carefully to their doctor’s answers. They may find it helpful to write the answers down for future reference or to take family members with them to help them. Again, they should direct their inquiries to the right specialist. Information gathering often happens over several visits and with many different people. It’s a process that takes time.

Relationships are built by working with different members of the team and becoming an active participant in the recovery process. Motivation for rehabilitation comes from within the individual who takes advantage of the healthcare team’s skills, guidance and support. Patients who sit back and wait for this process to happen to them, rather than taking a proactive role in their own healthcare, will probably be disappointed with the results. This can be a very difficult time, and there may be a temptation to say, “Wake me up when it’s over.” But to get from point A to point B, the patient has to be the one driving the process. Rehab is not something that happens to patients; it’s something patients do for themselves. It’s not a spectator sport. Active participation in the process is mandatory.