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Managing Phantom Limb Pain
Learning to Walk with a Prosthetic Leg
While all prosthetic users face challenges, those with a hip disarticulation or transpelvic (hemipelvectomy) amputation face perhaps the longest road to becoming a successful lower extremity prosthetic user. Research indicates that people reject HD/TP limbs more than any other prosthesis.
If you have had or are facing this type of amputation, it is important to understand that your rehabilitation process may be slow and gradual. Positive outcomes are the result of a strong working relationship between you, your prosthetist and your physical therapist. Another key factor is having a prosthesis with a comfortable socket, such as Hanger Clinic’s anatomically contoured socket for HD/TP.
High-level prosthetic users encounter unique lifestyle issues not faced by other lower extremity users. Areas of special concern are quite personal and include: using the bathroom; weight control and physical fitness; being comfortable at home; and pregnancy and childbirth.The fit of the HD/TP socket can make using the bathroom cumbersome. Typically, men do not have to remove their prosthesis to urinate, but women sometimes do if their socket crosses over the midline. For both men and women, it is usually necessary and more convenient to remove the leg for a bowel movement. It is not unusual for a person with an HD/TP to have had a colostomy. If you are in this situation, the socket will be designed with a hole that allows for the stoma to exit the socket and connect to the collection bag. On the inside of the socket, a small ring of soft plastic will extend out from the stoma, spreading the weight-load and preventing pressure in that area. Finding the right undergarments can be difficult and many people end up creating their own undergarments from cotton or spandex. Ready-made stockinets and socks are also available and some people like one-piece unitards. Another option is to modify bicycle shorts by trimming off the length on one side and sewing it shut. Since the socket wraps snuggly around the waist, many people have rolls of soft tissue around the top of the socket. Therefore, you might prefer undergarments that extend above the socket as they help protect the soft tissue from being pinched or chafed. Some individuals find that undergarments cause irritations and choose not to wear them.
As an HD/TP user, weight control is especially important. With a socket that encompasses your abdomen, excess fat can lead to an uncomfortable fit. Carrying extra weight also puts stress on the residual muscles and on the entire sound leg, especially the joints. Walking on a HD/TP prosthesis can be quite difficult and being overweight makes it more so, reducing your energy and stamina. And remember…even for those who maintain a healthy weight, HD/TP users require up to 200 percent more energy to walk than the average person. It is critical for you to control your weight by following a healthy diet, and including exercise in your daily routine. The strength you build through physical fitness can help lead you to real mobility and success in your day-to-day activities. HD/TP users also have special concerns related to their skeletal system, particularly the back and spine. The normal muscular-skeletal attachments have been disrupted by surgery and this can lead to the development of scoliosis or abnormal curvature of the spine. TP amputees are most vulnerable as they have lost half of the muscle and tendon attachments that held the back straight. HD/TP amputees should be examined for scoliosis on a yearly basis; the earlier it is detected, the better the chances of preventing it from worsening. Ask your prosthetist about creating a “sitting socket” that you can literally sit on when you are not wearing your prosthesis. Sitting sockets help distribute weight and pressure more evenly over the entire residual area, reducing the tendency towards scoliosis and back alignment problems. Sometimes an orthotic back brace is also recommended. A sitting socket is critical if you use a wheelchair all or part of the time, and is also good to have if you participate in recreational activities where the prosthesis is not worn. Another useful item is called a pelvic leveler; it is a small foam cushion you can place under the amputated side when you are sitting without a prosthesis.When you are relaxing at home, you will probably want to take off your prosthesis. Like kicking off your shoes at the end of a long day, it is simply more comfortable to remove the prosthesis, especially when you want to sit on the floor. There is always a bit of risk associated with not wearing your prosthesis. For example, many people will hop around on the sound leg, which is not a good idea for two reasons: first, it puts a lot of stress on the joints and foot, damaging the sound limb; and second, your chances of losing your balance and falling are greatly increased. Instead of hopping, crawl short distances or use crutches to get around the house. And speaking of crutches, don’t assume that any old pair will do. Your crutches must be fit correctly or you will develop strains in the arms and hands; crutches should be lightweight and have shock absorbing tips. Some people use a single crutch for added stability when they are walking on their HD/TP prosthesis, and many people rely on a cane for balance.
Women with high-level amputations often wonder if their body will be able to accommodate a pregnancy. It is easy to see why the absence of a hip, or a hip and pelvic bone, might make this significantly more difficult. There are several Hanger Clinic patients who have had normal pregnancies and normal vaginal deliveries. This is easier for HD patients since they still have the supportive bone structure of the pelvis to help carry the weight of a pregnant uterus. TP users run a greater risk of having a dropped or tilted uterus. As the abdomen expands, the socket can be modified, however, it is recommended that pregnant women stop wearing their prosthesis by 20 weeks gestation to prevent putting pressure on the baby. You may prefer to take your prosthesis off at an earlier stage; it is an individual decision. Some women report that a supportive maternity sling that extends under the abdomen can be very helpful.To learn more about special considerations for HD/TP users, visit www.hphdhelp.org. This comprehensive website was developed by HP user Christina Skoski, MD. Whenever possible, your Hanger Clinic prosthetist will connect you with another HD/TP user for information sharing and support.Interested in learning more? Call 1-877-4HANGER or visit this page to request more information.