Taking the next step in discovering life after limb loss or difference can be both exhilarating and intimidating. The process of getting a prosthesis, whether it’s your first time or you’re replacing an existing device, deserves careful consideration for achieving the best outcome possible. We understand just how daunting this journey may seem so we’ve put together some helpful answers to get you started!
Why would I use a prosthesis?
A prosthesis is simply a tool. It is an artificial replacement for a missing limb or part of a limb that can help you regain independence after your amputation or if you are living with limb loss. Choosing to use (or not use) a prosthesis depends on your personal goals. The best prosthesis is one that will help you reach your goals and live the life you’d like to live. Some important things to ask yourself are:
· What do you want to be able to do with a prosthesis?
· What activities do you plan to do?
· Do you want to walk or run?
· Do you care about the way it looks?
There is no one device that is best for everyone. The key to success is working with your doctor, prosthetist, and rehabilitation team to address your needs and concerns. Your prosthetist will work with you on design and fit. Your physical and occupational therapists will work with you to teach you how to use your new prosthesis to the fullest and to help you achieve your goals.
In general, how does a prosthesis work? What does a prosthesis look like?
A prosthesis is basically an extension of your body. Individual prostheses will differ depending on the level of amputation, a person’s physical abilities, and their personal goals and needs. Your prosthetist is responsible for making design recommendations and creating a device that is custom-made to fit your limb and suit your lifestyle.
The basic components of a standard upper-limb prosthesis are similar to those of a lower-limb prosthesis (sockets, pylons, etc.). While a lower-limb prosthesis incorporates a foot with a focus on ambulation (walking), an upper-limb prosthesis will have a “terminal device” such as a hook, hand, or a specialized tool, with a focus on functional enhancement.
The socket is the receptacle into which your residual limb will fit. Usually a liner or socks—or a combination of both—are applied first over the residual limb, followed by the socket. Liners fit over your residual limb and provide a barrier between your skin and the socket. Socks of various thicknesses, or “plies” may be worn over the liner to keep the socket fitting intimately as the volume of your limb may change during the day or over time. The liner provides cushioning and comfort while providing a better fit for the socket. It is essential that the socket fits correctly. A poorly fitted socket can lead to pain, sores, or blisters on your residual limb. The prosthesis must also be suspended or held onto the limb by some means, such as a suspension sleeve, or a locking pin that is attached to the liner and fits into a locking mechanism. Other suspension options include suction or vacuum, and cuffs or harnesses. Some sockets are held on by gripping over the anatomy, such as the widening of the femoral bone above the knee. Your prosthetist will be able to discuss the many socket and suspension options with you and can help you understand the pros and cons of each.
A prosthesis can look pretty much however you want it to. Be sure to discuss what you have in mind with your prosthetist because each option has pros and cons that can affect the weight, ease of cleaning and maintenance and durability of the finished prosthesis. From the ‘uncovered’ look of the mechanical parts to a cosmetic cover that looks like a natural limb, you have many options. If you want to make a fashion statement, you can have your socket covered in your favorite team’s logo or accessorize it with your favorite color or pattern. The prosthesis is an extension of you and your style – wear it proudly!
Technology and innovative prosthetic device approaches continue to provide more and better care options. The provision of a prosthesis represents the culmination of assessment, evaluation, design, fabrication, fitting, training and follow-up, ultimately resulting in a custom device. The profession is clinically-based and service-oriented, so it is important that you work with a prosthetist who listens to your needs and goals, and to whom you will have relatively easy access for adjustments and maintenance over time. With advances in techniques, materials and components such as microprocessor knees and advanced feet, hands with multiple grasp patterns, and osseointegration, new opportunities continue to be developed to help people with limb loss and limb difference live the lives they most want to live.
Will I need to use a wheelchair or crutches?
Some individuals find that a wheelchair or crutches are helpful in reaching their goals. The type of assistive device you use is your choice. Many individuals with limb loss and limb difference have a wheelchair or pair of crutches that they use at least part of the time. They may use them for nighttime trips to the bathroom, showering, traveling long distances, or if problems arise that require leaving the prosthesis off for a period of time. A wheelchair may continue to be used for exercise and sports. Crutches may help save wear and tear on your residual limb for activities like longer walks or hiking, and can help you get around if you occasionally have times you can’t or don’t want to use your prosthesis. Using an assistive device is an individual decision that is based on your needs and comfort level. Find your state’s Department of Assistive Technology in Community Connections.
How much will a prosthesis cost, and how can I pay for it?
A prosthesis can range widely in price and will depend on your amputation level and the type of device that is best suited to you and your individual needs. Typically, your prosthetic device will be partially covered by your insurance plan. Some insurance plans may even cover the entire cost of the device. You will need to work closely with your insurance company to understand the types of devices and services that will be covered under your policy. Be prepared to make several phone calls, provide documentation, and be your own advocate with your insurance company. You should check to see if your policy includes coverage for a prosthesis and know the limitations and exclusions in your policy. It is important to know that working with your prosthetist on fit and alignment of your prosthesis should be bundled with the total cost of your device. Your prosthetist should continue to work with you until you reach a comfortable fit and alignment.
The Amputee Coalition has created an Insurance Coverage and Reimbursement Guide to help you navigate common insurance questions. Contact the Amputee Coalition’s National Limb Loss Resource Center at 888-267-5669, option 1 to request your free copy. If you find yourself in need of help to pay for a prosthesis, you can find different funding opportunities by reading the Financial Assistance for Prosthetic Services, Durable Medical Equipment, and Other Assistive Devices fact sheet.
What is a K Level?
A K level is a scale used by Medicare to rate your rehabilitation potential. Many private insurance companies follow Medicare’s example to establish coverage guidelines. The K level is a rating from 0 to 4 that is used to predict your potential success with your prosthesis. It may change over time as you improve in your ability to wear and use the prosthesis. The K level is important because it is used by your insurance company to figure out what type of prosthetic device and specific components like the knee and foot, they will cover for you. Insurance companies want to know that the prosthesis you receive will be appropriate and functional. The potential function of your prosthetic device is determined by your pre- and post-amputation capabilities and goals in order to create a full picture of your functional abilities and any limitations you may face on a typical day. Your doctor will complete an assessment of your physical and cognitive abilities to determine your K level. The different K Levels are:
· K0 Level: Does not have the ability or potential to ambulate or transfer safely with or without assistance. A prosthesis does not enhance quality of life or mobility.
· K1 Level: Has the ability or potential to use a prosthesis for transfers or ambulation on level surfaces at fixed walking speeds. Typical of the limited and unlimited household ambulator.
· K2 Level: Has the ability or potential for ambulation with the ability to traverse low-level environmental barriers such as curbs, stairs, or uneven surfaces. Typical of the limited community ambulator.
· K3 Level: Has the ability or potential for ambulation with variable cadence. Typical of the community ambulator who has the ability to traverse most environmental barriers and may have vocational, therapeutic, or exercise activity that demands prosthesis use beyond simple locomotion.
· K4 Level: Has the ability or potential for prosthesis ambulation that exceeds basic ambulation skills, exhibiting high impact, stress, or energy levels. Typical of the prosthetic device demands of the child, active adult, or athlete.
How do I choose a prosthetist?
The relationship between a person with limb loss or limb difference and their prosthetist is unique and critically important. Many individuals with limb loss have a lifelong relationship with their prosthetist. This makes choosing a prosthetist a very important decision. A prosthetist may be recommended to you, but the decision is ultimately yours to make. Be sure your prosthetist is professional, knowledgeable, reliable, licensed (if your state has licensure), nationally certified, and is recognized as a provider by your specific insurance company. You can find more information about choosing a prosthetist by reviewing the brochure produced by the Amputee Coalition and American Academy of Orthotists and Prosthetists: Patient and Prosthetist: Working Together for a Successful Outcome or our Locating a Certified Prosthetist fact sheet.
For help in finding a prosthetist near you, visit the Prosthetist Finder.
When will I get a prosthesis?
The timing depends on how quickly your residual limb fully heals from the surgery. Some individuals receive a temporary prosthesis immediately following amputation or within two to three weeks after surgery. Usually, a prosthetic device fitting begins two to six months after surgery once the surgical incision has healed completely, the swelling has gone down, and your physical condition improves. The rehabilitation process, however, should begin soon after your surgery with physical and/or occupational therapy, learning mobility with a wheelchair, walker, or crutches, and exercising and stretching to avoid contractures to keep you as mobile as possible and prepare you for wearing and using your prosthesis.
Once I get my prosthesis, how soon can I get back to what I used to do before my amputation?
Your new normal will depend on the type of amputation(s) you have, your rehabilitation process, and your overall health and well-being. Your prosthesis will be a tool to help you do the things you used to do as well as the activities you want to do now. How well you do will depend on your goals, a correct and comfortable prosthesis fitting, follow-up care, and determination. The first year following an amputation can be a difficult adjustment. There will be changes in the shape and size of your residual limb. You and your team will put in a lot of work to recondition muscles. Your body will need to relearn activities, gait, balance, and coordination. You will also need to learn to trust your prosthesis.
You will continue to improve with time and effort. It is important to have a strong support network around you for this journey. The Amputee Coalition’s Peer Support programs are an excellent resource to help you build support with others who have experienced limb loss or limb difference. Our Peer Support team can connect you with a support group online or in your area, as well as connect you with a Certified Peer Visitor who can offer you encouragement and information from their perspective. For more information on how to connect with others in the limb loss community, visit the How to Find Support page.
What if the prosthesis does not fit correctly?
The process of being fit for your prosthesis will involve several visits to create a device that fits you and your needs. Some amputations can be more challenging to fit correctly and may require multiple fittings. Remember, your prosthetist doesn’t restore your limb, but rather replaces it with a prosthesis. Even when fitted properly, it takes some time to get used to the sensation of taking weight through your residual limb. While some initial discomfort can be anticipated as you get used to a prosthesis, pain is not an anticipated part of the process. If you should experience pain, try to be as specific as possible in describing what you are feeling and where you are feeling it to your prosthetist so that it can be addressed. Follow-up visits with your prosthetist can be as important as the initial fitting. As your residual limb changes and continues to heal, you will need to make follow-up visits for continuing evaluation of your progress and potential adjustments. Tell your prosthetist if the prosthesis is uncomfortable in any way, so your prosthetic team can relieve pressure areas, adjust alignment, or resolve problems you are experiencing. The more comfortable the fit, the more likely you are to use your prosthesis. Talk honestly with your prosthetist about your needs and goals. Discuss the things you want and need to do in your life after surgery.
How long will my prosthesis last?
Depending on your age, activity level, and growth, the prosthesis can last anywhere from several months to several years. In the early stages after limb loss, many changes occur in the residual limb that can lead to the shrinking of the limb. This may require socket changes, new liners, or even a different device. Increased activity level and a desire to do more activities can create a need for a change in the prosthesis or its parts. Once you are comfortable with the fit of your device, the prosthesis should only need minor repairs or maintenance. However, your prosthesis should be regularly checked by your prosthetist to avoid any major problems.
Is it difficult to learn to use a prosthesis?
Learning to use a prosthesis can be a challenge. It takes time, effort, strength, patience, and determination. Your prosthetist should give you some training on using your new prosthesis. Many people also find it helpful to work with a physical therapist or occupational therapist who is familiar with working with individuals with limb loss and limb difference. This is especially true for your first prosthesis or after a major change in the components. Much like learning how to operate a car, there is a lot to learn at the beginning. It should become second nature with practice.
Your prosthetist should teach you how to:
· Take care of the prosthesis;
· Put on (don) and take off (doff) the prosthesis; and
· Walk on different types of surfaces, including stairs and uneven surfaces.
A physical or occupational therapist can teach you how to:
· Handle emergencies safely, including falling down and getting up again;
· Perform daily activities at home, work, and in a car;
· Improve your gait to help you walk better; and
· Try out new things you may be unsure about including sports and other recreational activities.
What can I do to prepare myself for a prosthesis?
There is a lot you can and must do to be able to use a prosthesis, beginning with these top priorities:
· Work through the feelings and emotions you are experiencing and decide how to approach your life after an amputation. Remember that everyone responds differently to the loss of a limb or being born with a limb difference. Don’t be afraid to look into visiting with an amputee peer, attending an Amputee Support Group, or working with a counselor or Psychologist, as these are all normal ways of coping with such a major life change.
· Exercise to build the muscles needed for balance and moving around.
· Prepare and take care of your residual limb to attain a proper, sound shape.
· Learn body positioning, stretching and strengthening to maintain muscle tone and prevent contractures.
Once I have been fitted for a prosthesis and it feels comfortable, what happens next?
You should plan to make follow-up visits to your prosthetist a normal part of your life. Any changes in your residual limb, such as swelling or shrinkage, or a significant change in your body weight, may require a follow-up with your prosthetist to adjust the fit of your socket. Prostheses, just like cars, need regular maintenance and repair to keep working. Small adjustments can make a big difference. Proper fit of the socket and good alignment will make sure that the prosthesis works for you. It can also help prevent some secondary conditions individuals may experience such as skin breakdown or a misaligned gait.
Can the prosthesis break down?
Yes, things can happen that will require repair or replacement. It is a good idea to know about warranties and what to expect from your prosthetist. Get small problems taken care of right away — there is no benefit to waiting! Waiting may cause a more difficult repair or even serious skin breakdown. You can do harm not only to your residual limb, but also to other parts of your body. Strain on other muscles, like your back and shoulders, will affect your posture and the performance of the device and will increase the amount of energy needed to use your device.
Would it be helpful to speak with others who use a prosthetic device?
There is great value in talking and meeting with others in the limb loss and limb difference community. The Amputee Coalition can connect you in a variety of ways with others who have experienced limb loss or limb difference and have chosen to use, or not to use, a prosthesis. Visit the How to Find Support page to explore the many different ways you can connect with other individuals with limb loss and limb difference both locally and across the country.
For additional information, helpful tools, and resources, please contact the National Limb Loss Resource Center at 888-267-5669, option 1 or via our Ask an Information and Referral Specialist form.