Elliot Brown of Philadelphia had just come home from a vacation with his wife when he noticed the swelling in his left foot. He recently had surgery on the foot but he believed it healed perfectly. It was a Wednesday. By that Friday, Brown was in the hospital undergoing an additional surgery. The foot’s condition had worsened to the point that according to Brown, the surgery was a matter of life or death. He had two choices – either have his leg amputated or die. When doctors were preparing for the surgery, they believed they had to amputate Brown’s entire left leg. Fortunately, Brown only lost his leg below-the-knee.
Still unsure of the exact cause of his amputation, Brown’s positive attitude, personal experiences and family support allowed him to accept his transtibial amputation and gave him the freedom to move forward with his life – something thousands of amputees struggle with everyday.
Psyche of the patient
The amputation procedure plays a significant role in the psyche of a patient and may affect the entire rehabilitation process. Across the country, there are people like Brown who faced their traumatic experiences and were unaffected psychologically. However, it is agreed upon by experts that a patient that has time to prepare for amputation is better off psychologically than a patient that had little or no time for preparation due to a traumatic event. A patient who has the luxury of knowing they will undergo an amputation should take advantage of their situation. A patient can take control of their amputation by asking questions, receiving vital information and talking to amputees before their surgery. This ability to gather information certainly provides a greater psychological comfort than an amputee who lost a limb due to a trauma related incident. According to the Primary Care Companion Journal, amputees who anticipated surgery were more likely to go through the classic stages of loss — denial, anger, bargaining, depression and acceptance — than patients who had amputations following a traumatic incident. Lack of preparation due to the traumatic event may compromise the patient’s emotional understanding of their amputation.
The way an amputee patient expresses their pain is always different. What remains universally agreed upon is that every amputee feels a sense of grief and loss following their surgery. Mourning and grief while inevitable, can take on many forms according to the Primary Care Companion Journal.
“For example, someone has just had their amputation and really just wants to be alone,” Charlene Whelan, health educator for the Amputee Coalition of America (ACA), said. “That could look like depression and it could be a sign of depression, but for some people, it is their preferred way to deal with it.”
Whelan believes it is important for a patient to acknowledge their feelings. A patient’s emotional suffering will affect their future physical adjustment. Recognizing their grief as a process will provide a better adjustment for the patient.
“As long as they are reaffirming their own commitment to themselves through that process, then they are fine,” Whelan said.
An amputee’s coping style is a product of their personality. According to John C. Racy MD, professor of psychiatry University of Arizona and author of the chapter, Psychological Adaptation to Amputation from the book, Atlas of Limb Prosthetics: Surgical, Prosthetic and Rehabilitation Principles, patients who are engrossed in their physical appearance will act negatively toward the loss of a limb. The amputee may be left feeling helpless immediately after surgery, striking a major blow to their dignity. In the best interest of the amputee, practitioners must maintain a positive outlook despite the patient’s possible negative reactions, post-amputation.
Sarah Cavanagh, PhD co-author of the study, Psychiatric and Emotional Sequelae of Surgical Amputation, stated the importance of understanding the emotional aspect of amputation when the patient is at home trying to slide back into their normal lifestyle.
“The patients we interviewed were in rehabilitation hospitals and once they went home, they had to deal with more changes to their lifestyle and the greater difficulty of navigating through life,” Cavanagh said.
Personality certainly plays a role in the emotional recovery of an amputee but there are other factors according to Whelan. She pointed to other health issues, financial concerns, family support systems, divorce and a death in the family as just some of the other issues that may leave an amputee patient vulnerable to depression if they are not properly prepared psychologically.
“There are a lot of things that can play into it but your best cue, if you are trying to assess at that standpoint, would be to understand how the patient handled major losses in the past,” Whelan said.
Brown realized he could not let this injury conquer him. Having little to no time to prepare for the surgery, he vowed not to feel sorry for himself after his amputation. Instead, he leaned on his own personal experiences to help him get through some difficult times. He looked back at the death of one of his friends.
“I knew someone that had an amputation,” Brown said. “He just laid around his house and eventually passed away. He didn’t do anything positive and I didn’t want that for myself or for my family. It was constantly in the back of my mind.”
Although he has maintained a positive outlook, immediately following his amputation, Brown felt embarrassed and afraid everyone would laugh at him because of his injury. His lowered self-esteem and self-image is considered normal. Individuals who normally focus on their appearance will have a more difficult time understanding and accepting their amputation than more self-assured individuals.
In his article, Body Image: The Lower-Limb Amputee, author James Breakey stated that one of the requirements of an amputee is the revision of their own body image.
An amputee, who has a poor perception of their amputation from a body-image perspective, has a higher degree of anxiety and symptoms of depression. According to Racy, an amputee must contend with three body images: intact, amputated and with prosthesis. A patient rejecting the last two body images will experience a longer inability to adapt.
Change in body image is one of the biggest factors in depression after amputation. According to Racy, early introduction of the prosthesis may help the patient adapt. A patient that wakes up and sees a leg in place for example, may have a faster acceptance of their new image.
Racy also suggests the language used by practitioners is a small detail that could really benefit or hurt the patient’s psyche depending on the tone. He explained that sometimes the language of failure is used to describe an amputation when the amputation, in most cases, should be regarded as a relief of pain or disease.
“[Amputation] is a reconstruction of the body in order to give the patient a better life,” Racy explained to O&P Business News. “Emphasis on reconstructing and rebuilding for a better future makes a big difference.”
Racy argued that the amount of function an amputee has directly relates to their psyche. Racy believes function is dependent on how inconvenient the amputation is for the patient’s daily living and employment.
“If you are a mechanic and you make a living with your hands and you lose your hands, you may still be a good mechanic but you are going to be constantly asking someone for help,” Racy explained. “Versus if you are a psychologist like me and I lose my hand. I can still perform 95% of my work.”
A well-fitting prosthesis that reduces pain immediately after surgery will reduce the risk of post-amputation depression. Monitoring the condition of your amputation is not only necessary for health reasons but also because of the correlation between pain and depression. The more pain an amputee is in, the less likely they will be an active participant in rehabilitation. This lack of activity may leave the patient with a higher risk of symptoms of depression.
“I do not consider myself handicapped,” Brown explained. “Everything that I used to do, I still do.”
Brown maintained his positive attitude when he came back home following his amputation. Other amputees have continued fighting the battle to assimilate back into their communities.
“Someone who is struggling to adjust should to be aware of the impact that their moods may be having on their overall functioning,” Emily Askin, PhD, neuropsychologist at Magee Rehabilitation in Philadelphia, said.
In order to make the distinction between normal grief and depression somewhat easier, psychologists can diagnose a patient with adjustment disorder.
Adjustment disorder is a class within psychology and is a more appropriate category for a psychologist to use according to Askin. It is generally understood that symptoms for adjustment disorder begin within 3 months of the event and do not last longer than 6 months. If symptoms such as hopelessness, withdrawal, sadness and anxiety continue for longer than that time period, the patient likely is going through something more serious.
“Everyone coming to a hospital like this is coming after a major change in their life,” Askin explained. “We have to give them a natural period of time to adjust to the major change. If [the symptoms] last longer than a certain period of time, then we may consider that the patient is in one of the categories of depression.”
While positive reinforcement by a doctor, prosthetist or therapist is important and necessary, it is not surprising that many amputee patients do not find it helpful. According to First Step: A Guide to Adapting to Limb-Loss, doctors and prosthetists may have treated thousands of amputee patients in their careers but they still can not fully understand the emotions an amputee patient endures because many of them have not gone through it themselves.
“[In] a major life event like this, the universe collapses around us,” Whelan said. “Our friends can’t reach us, our family can’t reach us, but another amputee has that ability, even if it is just their presence.”
Peer support groups are considered by most experts to be a valuable tool for the patient. Each support group in each hospital is different. Some groups are organized around activities, while others are organized around athletics. Groups are formed specifically for new amputees, while other groups are created for social interaction. There are support groups around the country that have speakers join them to share their personal experiences as well as one-on-one support groups. The ACA certifies their peer visitors by training them to hone in on their listening skills, recognize the elements of recovery and to always understand their boundaries.
A new amputee or a patient struggling to accept their amputation may sit down with a fellow amputee and realize that living a normal life is a possibility. This realization does not normally occur after the first meeting.
“At that level there is an understanding between the two,” Whelan explained. “It just cuts through so many barriers. It gives them a sense of hope that nobody else can understand,” Whelan said.
Despite the growing popularity and the recommendation of just about everyone in the psychology and medical community, people who are depressed generally do not attend these meetings according to Whelan, who has personal experience with patients that refuse or are not open to support.
“Or if they do go, they make a point to say that there is nothing anyone can do to help them,” Whelan said. “At which point, it may be helpful for the support group leader to encourage a referral.”
Brown attended two support group meetings while in his rehabilitation hospital. Although he was lucky enough to have a supportive family and strong spiritual belief, he would certainly recommend support groups to those who may need it.
“I believe that it is important to stay positive and have positive people around you,” Brown said. “And talk to people. Do not be afraid to share your story.”
For more information:
- Breakey, James W. Body image: the lower-limb amputee. Journal of Prosthetics and Orthotics. 1997;9(2): 58-66
- Bhuvaneswar, Chaya, Epstein, Lucy, Stern, Theodore. Reactions to amputation: recognition and treatment. Primary Care Companion Journal of Clinical Psychiatry. 2007; 9(4): 303-308
- Racy, John C. Psychological Adaptation to Amputation. In: Bowker HK, Michael JW eds. Atlas of Limb Prosthetics: Surgical, Prosthetic and Rehabilitation Principles. Rosemont, IL, American Academy of Orthopedic Surgeons; 1992: Chapter 28.
- inMotion Staff Writers. The value of peer contact. First Step: A Guide for Adapting to Limb Loss. 2001; 2:1-3
Anthony Calabro is a staff reporter for O&P Business News.