Before we begin, allow me to give you a little background. I, myself, have never had a limb amputated, and so I am going to try and do my best to avoid writing about aspects of the experience that only an amputee could rightfully express, such as the physical or mental pain that one is likely to experience. If I must talk about those things, and I very likely will, please know that they are merely my observations and insights into the experiences of someone else. With that settled, I want to let you know that the reason I feel at least a little qualified to offer my insights into this issue. In April of 2009, my sister, then seventeen years old, was involved in a tragic car accident in which the lower portion of her right leg was damaged beyond repair, and had to be amputated. Since that time, I have been able to observe first-hand the process of limb loss and prosthetic acquisition, as well as to converse with other amputees whom my sister and I have had the pleasure to meet about their own experiences. With the preliminaries taken care of, here are some points of interest:
The Surgery: In my sister’s case, her right leg had been mangled and broken between the knee and the ankle. Large portions of skin and muscle tissue had been left at the scene of the accident, and could not have been restored, anyway. Almost as soon as my sister’s life-flight helicopter arrived, the emergency room staff told us that there was a possibility that she would lose that portion of her leg, and this was confirmed by the surgeon as soon as she arrived in the operating room. He told us that there was simply no way to save the leg, and that he would, unfortunately, have to amputate. He assured us, however, that she would eventually regain a completely normal life and be able to engage in all the activities and sports that she had before, including rock climbing, skydiving, and competitive swimming. She was not told about the amputation, or even its possibility, before the surgery.
This will be a difficult time for family members. Even though we were told that this was possible before the surgery began, hearing that it was definitely the only way to proceed was a profound blow. If you’ve never had the wind knocked out of you by mere words, this ought to be the kind of news that makes you feel like Muhammad Ali has just given you the rope-a-dope. It may not fully sink in at this time, but your family member is going to lose an integral part of their body, a part of themselves. You may think, “Hey, it’s just the bottom half of her leg.” True, it is. Nevertheless, it’s a part that will be gone forever, and you cannot underestimate the significance of that fact.
During the surgery, my family and I were not entirely worried about my sister’s leg, to be honest. She had suffered some other injuries, which appeared to be even more serious at the time. The trauma to her head (it was unknown whether their had been brain damage) and blood loss indicated to the ER staff that she might not be able to survive the surgery, so we were honestly more concerned about that. If amputation suddenly lands itself in your life due to an accident, I can say that, in comparison to the possibility of death, losing a limb really shouldn’t be all that bad. It wasn’t for any of us.
Surgical Recovery: In my sister’s case, once again, I should not the possibility of a different experience than many other amputees will have. My sister’s amputation was the result of a car accident. She had significant other injuries from which she also had to recover, and so she was immediately taken from surgery to the Intensive Care Unit. A few hours later, she regained consciousness. She had not been told before surgery that she would indeed undergo an amputation, and, when she woke up, she was not aware that it had happened. She was heavily drugged and was still recovering from serious head injuries. Nevertheless, it was a matter of a few short hours before she began to feel excessively hot under all of her blankets and began peeling them off, one by one. Eventually, one could easily see that her right leg was not all there. Before that fact had caught her attention, my parents decided, with support from the nursing staff, that they may as well give her the bad news themselves and try to make it as easy as possible.
I was not there, but I can relate what my parents told me about the scene. She was laying in her ICU bed, still a bit loopy and occasionally nodding off, and my parents walked into the room together. The other visitors left. My mother held her left hand (the right had been damaged, as well, and was all wrapped up in gauze). They told her that the doctor had to amputate part of her right leg. She had been told, back in the Trauma Center, that this was a possibility, and so she was not entirely shocked. In fact, she had woken up at a certain point on the scene of the accident and caught sight of her right leg, so she knew that it was badly damaged. Whether because she knew about the possibility beforehand, or because she was still drugged, or because she has an inherent strength of character, or perhaps because of some combination of all these factors, my sister did not feel an impending doom or desperation at the news. She was, in fact, quite calm about the matter. Subsequently, whenever a new visitor came into the room, she was sure to throw off her covers and hold out her right leg, saying, “Look, they cut off my leg!” with alarming enthusiasm. At first, one might have thought that this was an effect of denial, but, to this day (almost six months later) my sister has not shed a tear for her severed limb–she has kept right on going.
After a few days in the ICU, doctors and nurse alike were confident that my sister could be moved into a regular hospital room, and so she was. There, she underwent what I can only presume is rather routine care. Her wounds were checked up on and cleaned periodically, her diet was re-stabilized, and her pain was treated. It was during this time that she began to feel the infamous “phantom limb” phenomena. Perhaps a special word on that:
Phantom Limb: My sister began feeling phantom limb sensations very soon after she was told that her leg was no longer there. Presumably, she “felt” the leg there as normal until she heard the news. Thereafter, the sensations she experienced were not necessarily phantom limb pains. At times, she did feel pain. However, at other times, she said she felt a tingling, a burning, an itching, or a pulsation, all from the portion of the limb that was no longer there. While I have no doubt that this phenomenon is troubling and difficult for many people, and perhaps will be in your own case, my sister was never particularly troubled by it. I honestly expected this to be a much bigger deal for her than it actually was. She experienced the sensations for, at maximum, two weeks, and, as I said, not all were painful. She had the presence of mind never to get confused about whether her limb was still there, and she did not require any particular therapy to get rid of them. Within two weeks, they simply stopped.
Beginning Physical Therapy: While she was still in the hospital, my sister’s medical team started her on a regimen of physical therapy. She had lost her right leg below the knee, about halfway to the ankle. As mentioned, some extensive damage was done to her right arm, which had not yet even been operated upon with the exception of stitched, and so she would not have been able to use crutched. For balance purposes, I suspect that they would not have started on crutches, anyway. She began her therapy, then, in a walker, with a special attachment strapped to her right forearm so that she could lift the walker without making her arm injuries worse. Her hospital room was located in a wing of the hospital that essentially loops around in an octagon, and so she started off making laps, two or three of them, once and soon twice a day. She took to the therapy with great enthusiasm. It began about a week and a half after the accident and her initial surgery. She was very competent and energetic with her walker, and all the nurses and doctors were impressed.
Coming Home: By the second week after the accident, my sister was at home. She rented a wheelchair from the hospital for when she was tired or would have to travel long distances, but she also brought home her walker for use around the house and short walks. Likely because of all her medication, she spent a lot of time sleeping during her first week or so at home. Her head injuries were still healing, and her arm would still require surgery. Nevertheless, she was thrilled to be at home, wearing her own clothes, eating her own food. I am not sure whether this was at the doctor’s insistence or hers, but my sister made sure to take a walk every day with her walker, usually a few blocks down the road to the convenience store and back.
Allow me to be specific. For any person with two normal legs and feet, this walk would take fifteen minutes, round trip. My sister was insistent that she do it at least once a day, usually at a rate of about two and a half hours. Nevertheless, she was persistent and determined, an attitude that she has consistently maintained this whole time, and I think she owes much of her success to that outlook.
Over the course of the next few weeks, my sister’s wounds began to heal, albeit very gradually. It became apparent after a little while that part of the tissue the surgeon had left behind was not going to heal, and was in fact dying right there on her. I suppose this is an experience that could happen to a lot of amputees either from accidents or from some malady like diabetes. I have two caveats. First, if this does happen, it is going to stink. Do not be surprised if the stench of rotting flesh fills your home. This part can certainly be difficult for the amputee and the whole family, so watch out. Second, and much more importantly, is the fact that this means you will need more surgery.
Another Surgery: There was some discussion from the surgical team on this one, and a few matters really couldn’t be resolved before going to the OR. So, my sister was once again going under the knife without knowing how she would come out. The essential question on everyone’s mind was whether it would be possible to extract all the dying and dead tissue and close the wound without amputating more of the leg. The latter was certainly a possibility. Thankfully, the cosmetic surgeon who performed this procedure (a different physician that the surgeon who initially amputated) was able to re-shape and close the wound without removing more of the leg.
After this surgery, healing started to become much, much faster. Initially, she stitched-shut stump was rather repulsive to behold. However, over the course of about two months, the swelling went down, the incisions faded (not completely, of course), and the skin began to form a contiguous whole over the end of her leg. The skin was still sensitive for about the entire two-month period, if not a little longer. My sister’s wound in particular was a bit troublesome because, at first, there was a half-dollar sized opening in it that the doctor said would have to close and heal over time. That took quite a while, but it did eventually close completely. It was at that point that my sister was able to start swimming in natural bodies of water again (she had been able to swim in chlorinated pools immediately after the second surgery’s stitches started to fall out).
Physical Therapy: It was about two months that my sister was still using the walker. Mostly, this was due to the injuries to her hand and wrist, which would have made it nearly impossible to maneuver a set of crutches. However, after about two and a half months, she was given crutches, which greatly increased her mobility. She was now about to do the convenience-store circle in about a half-hour. I imagine that this process will be quicker for amputees who have not suffered other injuries. She was on the crutches for about three months before doctors told her that her stump had healed sufficiently for a prosthetic. Most of the work conducted during this time was a matter of helping her find her balance on just one leg. She became a master at hopping in every scenario–sidewalks, beaches, fields, woods, staircases, etc. Once the leg was healed enough for the pressure of a prosthetic, that stage was immediately taken up:
Fitting the Prosthetic: The prosthetic process is something of a pinnacle that seemingly every amputee is eager to achieve. Nevertheless, once there, the process can be slow. Before anything else, she had to wear compression socks for about a week and a half. The purpose of this is to prepare the stump for increased pressure and to continue to reduce swelling. My sister went in for an initial fitting. A mold was taken of her stump, from the very end up to the knee. It was a few weeks before she heard anything. These were tense weeks filled with anticipation. When the call finally did arrive, she went to the prosthetic specialist’s office to try it on. I suppose I may as well spend some time describing the model she chose:
At the bottom is a foot, crafted to resemble an ordinary foot. The toes are not actually separate from one another. The ankle moves when the lock is loosened, but it normally kept in the locked position during use. She can unlock it and re-orient her foot depending on the activity she’s engaging in. The ankle itself seems to be essentially a ball-bearing. Above that is a fiberglass tube custom fitted to her stump. On the stump itself, she first places a gel sock. This gel sock is composed of basically the same material as a shoe insert shock-absorber cushion. The sock extends from the knee to the end of the stump, and creates a kind of vacuum suction around the entirety of her calf. This vacuum will hold the prosthetic up when she lifts her leg, as will the design of the fiberglass tube, which hold snugly at the top of the calf. The gel sock has a bolt of about five inches in length attached to the end of it, which she will later insert into the prosthetic. On top of the gel sock, she wears a number of compression socks, still to reduce swelling. Once her stump is thus fully prepared, she lowers it into the fiberglass tube until the bolt meets with another locking mechanism. She has to sit down and push on her knee to get the bolt entirely into place, listening for a certain number of clicks to signify that the bolt is fully inserted.
As she walks, the prosthetic is design such that most of her weight is concentrated in the calf, wear the fiberglass boot comes to an end. The intention here is not to put excessive pressure on the stump itself, especially so soon after surgery. When she lifts her leg, the weight is shared between the fiberglass tube and the gel sock. The says that she feels no pain whatsoever during the entire process, though it is somewhat tiring because of the weight of the prosthetic (significantly more than an ordinary leg). For that reason, she was initially restricted (for about three weeks) to only wear the prosthetic for an hour at a time. During her first day on the prosthetic, she put it on incorrectly (such that the foot was pointing out to the right) without noticing. That, she says, caused her weight to shift and the stump to move inside the prosthetic, which cause pain, but does not appear to have done any damage.
Over the course of those three weeks on the prosthetic, my sister’s stump decreased in size rather rapidly, such that she very soon needed to have the fiberglass tube replaced. This is a normal part of the process, apparently, though it normally takes a few months. Regarding the prosthetic itself, it cost about $18,000, none of which was paid by my family. Thankfully, our insurance was able to cover that cost, and will continue to cover replacements once a year until the policy expires. According to the specialist, it is not unusual to replace prosthetics once a year when they are heavily used, though they are guaranteed (at least, within this company) to last for three. The word of the wise seems to be that this will continue well into adulthood, probably throughout her life.
More Training: Once my sister received the prosthetic, there was, and still is, considerable physical training to be done. The very first steps are thorough training in putting it on and taking it off, naturally. On the more exciting end, she had to re-learn to stand first. After that, she re-learned to walk, with crutches for about the first three weeks, just to make sure that she could keep her balance. When attempting to walk without crutches, she often had to sway back and forth to lift the prosthetic, and seemed hesitant to rest her weight on it, as if she didn’t trust it to support her. After three weeks, however, this was all cleared up, and she began walking perfectly well without crutches. When wearing long pants, it was impossible to tell that she had undergone an amputation. Since then, her progress has continued at a rapid pace, moving on to uneven ground, staircases, running, jumping, etc. Her favorite aspect of this process, aside from simply being able to walk again, was probably the Nintendo Wii, which her therapist used to train her to regain her balance, especially using the snowboarding game.
Amputee Community: If amputation is suddenly thrust upon you, you will hopefully be pleasantly surprised to see that there is an entire community of amputees in the United States, all of whom are very supportive and encouraging. While my sister was still in the ICU, the very day of her car accident, my family was sitting in the ICU waiting room talking about the possibility that she might no longer be able to lifeguard, or drive, or rock climb, or sky dive. We were very upset. Then, a man who had lost both legs at the hip several years earlier came over to us in his wheelchair and explained that there was nothing to worry about. Anything she had done before she would eventually do again wearing a prosthetic. He put us in touch with contacts of his who are also amputees:
First, there was a girl exactly the same age as my sister who had lost her entire right arm. She was on the starting line of her high school basketball team. She said that she had never been made fun of in school, never suffered any undue harassment of any kind, and had never felt limited by her injury. In fact, she said that she preferred not to wear her prosthetic simply because of its weight, and that she was leading a perfectly normal and enjoyable life without her right arm. This visit occurred about two days after the accident while my sister was in the hospital.
About two days after that, my father and brother went to a conference on prosthetics held at the same hospital by the company that produced my sister’s new leg. There, they met a young man named Cameron. Cameron lost his right arm at the shoulder and both legs above the knee when he was a child. He is a surfer, a hiker, an actor, a swimmer, and a motivational speaker. He made a special, private visit to my sister’s hospital room in which he, too, assured her that there was no reason her injuries (which he described as “just a hang nail”) should ever keep her from anything, and that she would still be able to enjoy all the same activities she did before.
The support and encouragement of these wonderful people, especially so early on after the shock of losing a limb, was of profound emotional and spiritual importance for my sister, and, in my opinion, is part of the reason she was willing to proceed through this difficult process with such energy and passion.
Over the past few months, my sister has gotten in touch with a number of other amputees, of all ages and situations, and has been glad to hear that same message repeated over and over again. In the winter, she will be taking an all-expenses-paid ski trip in Upstate New York designed especially for snowboarders who have recently lost a limb, in order to get re-acquainted with the slopes. She recently met the family that is paying for her trip, and their young son, whose injury is almost identical to hers, and who was seen running and jumping in his front yard when she arrived.
To wrap all of this up, then, the main message to be taken from this is, I think, that amputation will certainly be difficult and painful, and that wearing a prosthetic for the rest of your life will not be easy or comfortable, either, but that you can and will adjust to it, and that you can and will regain everything you had in life beforehand, if you have the right attitude and the constant support of family, friends, and other amputees, all of which should be readily available. Amputation is nothing to be afraid of, and your new “bionic” limb will soon be a part of you just as much as your biological limbs ever were.
