Surviving and Thriving With Limb Loss

Horseback riding, archery, snowshoeing and ice fishing are just some of the activities that amputees can enjoy at the Travis Mills Foundation Veterans Retreat in Maine, founded by a quadruple amputee injured in Afghanistan. Here, veterans with limb loss and their families gather together to heal, play and revel in the company of others who've been through similar experiences. 

Founder Travis Mills refers to himself not as a "wounded warrior" but as a recalibrated veteran who has adjusted to his new normal. "Never give up, never quit" is his mantra. As he says, "Although losing a limb is challenging, having an amputation is not a death sentence." 

"We can help people to do great things and to have fulfilling lives," says Janna L. Friedly, MD, director of limb loss at the Rehabilitation Medical Clinic at Harborview Medical Center and a professor in the Department of Rehabilitation Medicine at the University of Washington in Seattle.

According to the Amputee Coalition, a leading nonprofit national organization, 2.1 million Americans live with limb loss. More than 185,000 amputations occur in the United States each year – about 507 every day. By the year 2050, without appropriate intervention, it is estimated that those numbers could double.

Vascular disease, which includes diabetes, peripheral artery disease and blood clots, is responsible for 54% of amputations. Vascular disease can lead to poor blood flow, tissue damage and neuropathy (nerve damage). Trauma, such as that incurred in motor vehicle accidents, workplace injuries or combat situations, leads to 45% of amputations. 

Cancer is responsible for fewer than 2% of amputations. The most significant risk of losing a limb is for people 65 and older, and it is significantly higher for persons of color. According to the National Institute of Health, patients with diabetes mellitus have a 30 times greater lifetime risk of undergoing an amputation than people without diabetes.

Lower limb amputations, which can occur at different levels (above the knee, below the knee, at the ankle and others), are much more common than upper extremity loss such as that of an arm, a hand or a finger.

According to Friedly, "Except in an emergency situation, the process of limb loss begins well before an actual amputation. It entails meeting with your physician, determining if you want to proceed with surgery or if limb salvage procedures might be possible, or deciding whether the option to try to heal without amputation is a viable one. It may not be a clearcut decision and timing may be a factor."

She emphasizes that losing a limb is a long journey involving an interdisciplinary team. This usually includes a surgeon, a physiatrist (a doctor specializing in physical medicine and rehabilitation), a physical therapist, an occupational therapist, a social worker, a rehabilitation psychologist and a prosthetist, whom you would meet with many times over the year.

If amputation is decided upon, there are several stages in the process. Some of these will depend on whether a prosthesis (an artificial device built to replace a missing body part) will eventually be used.

The immediate recovery phase in the hospital after surgery can take three to seven days. During that time, one of the goals is to regain essential mobility so that you can get out of bed safely, stand on the intact leg and use crutches or a walker to transfer from bed to chair.

After surgery and in-hospital recovery, rehabilitation can begin at home or in an inpatient skilled nursing facility. Gait and mobility training and fall prevention are important aspects of rehabilitation.

It takes about four weeks for the incision to heal. Once the sutures are removed, a "shrinker sock" is used around the residual limb to shape it for future prosthetic placement. The next phase, occurring six to nine weeks postoperatively, is the fitting process for a prosthesis. A specially trained prosthetist fashions the artificial limb and makes the necessary adjustments.

Learning to function with the new arm or leg, which includes putting it on and off, caring for the device, using it safely for mobility or, in the case of upper limb prosthesis, for reaching, holding and other functions, is the next complex stage and can extend over many months. 

The cause for amputation and other contributing factors, such as comorbid medical conditions, pre-existing physical limitations or older age, can impact the ease and speed of adjustment. The final reintegration phase is when a satisfactory adjustment to the "new normal" and a satisfying lifestyle incorporating family, work and recreational activities is possible.

"In the past fifteen years we have seen enormous advances in the types of prosthetic devices that are used," says Friedly. "These innovations include the use of new materials and improved components in the prostheses themselves. These allow people to engage in higher level activities."

After lower limb amputations, many of her patients can ski, play golf, cycle and proudly walk their children down a wedding aisle. Myoelectric prostheses with sensors, targeted muscle reinnervation, electrical impulse stimulation and osseointegration, in which an implant is integrated into bone, are some exciting developments, with many more in the pipeline.

Thriving after limb loss includes both physical and emotional recovery. Anxiety, depression and grieving for losing a body part are very normal reactions, as are feelings about altered body image. Loving family, friends, counseling if needed, and the support of your care team can all go a long way in making the adjustment easier.

Pain is a common symptom after amputation. This includes residual limb pain (formerly known as "stump pain") and phantom limb pain, the perception of pain or discomfort in a limb that no longer exists. Estimates of people experiencing phantom limb pain, often described as tingling, throbbing, sharp, or a pins-and-needles sensation, range from 60% to 85% of amputee patients. 

Treatment includes a variety of medications including opioids, electrical nerve stimulation and mirror therapy, also known as mirror visual-feedback. (MVF) Ongoing research examines the possibility that mirror therapy can be enhanced when combined with psychedelic drugs.

Many organizations offer resources and support for amputees; the National Limb Loss Resource Center (part of the Amputee Coalition, whose Certified Peer Visitor Program offers contact with others with similar experiences), Limbs 4 Life, and the National Amputation Foundation, Inc.

The possibility of losing a limb can be minimized by controlling risk factors. Smoking cessation, controlling blood pressure and cholesterol, maintaining an average weight, eating a healthy diet, exercising, and taking prescribed medications are all important.

Routine medical checkups are crucial since, according to the CDC, one out of five people with diabetes is unaware they have it. If you're diagnosed with pre-diabetes, take it seriously; if you are living with diabetes, maintain reasonable glycemic control and ensure you are being monitored.

For all older adults, but particularly those with vascular disease or diabetes, excellent foot care (keeping feet clean and dry, wearing well-fitting shoes, not walking barefoot, and doing daily checks for foot irritations or blisters) is necessary, along with visits to a podiatrist as recommended. If you notice a wound, care for it immediately and appropriately because a leg ulcer or non-healing wound precedes many lower limb amputations.

The American Bionics Project, a nonprofit organization whose programs support disability tech entrepreneurs and startups working on life-changing solutions for people with lower limb disabilities, says, "Freedom of mobility goes well beyond just physical independence; it's also vital to mental health and social well-being."

Amputees can lead satisfying and productive lives with good rehabilitative care, patience and fortitude.

Barbra Williams Cosentino RN, LCSW, is a psychotherapist in Queens, N.Y., and a freelance writer whose essays and articles on health, parenting and mental health have appeared in the New York Times, Medscape, BabyCenter and many other national and online publications. Read More