Volume 19 · Issue 4 · July/August 2009 | Download PDF
by Robert D. Doty, Jr., MD, Chair of the Amputee Coalition’s Upper Limb Loss Advisory Council
(From inside the prosthesis, that is)
I am a physician who spent 30 years in practice. My specialty was emergency medicine, so trauma was not an unfamiliar occurrence. However, I did not expect to experience trauma of my own. When a hydraulic lift holding a car above me failed, gravity took over. As two objects cannot occupy the same space at the same time, and the car had considerably more mass and inertia than do I, I was, quite literally, dealt a losing hand – wrist and partial forearm also.
After battling the car for hours, I managed to get loose and find help. At the hospital, while I was treated, a deputy retrieved my arm from the site, and we were flown to another hospital where a surgical team reimplanted the arm during a 22-hour surgery. This included reconstruction of the radius, but the ulna was too badly damaged to reconstruct. (The radius and the ulna are the outer and inner bones of the forearm, respectively.) The cut through the arm was relatively “clean,” but the impact of the brake disc and wheel assembly had shattered the bone above the amputation.
I underwent treatment, including extensive physical therapy and several orthotics and continuous passive motion machines. Though the hand remained, there was no functional nerve return, sensory or motor. Worse, with a useless hand and a weak, painful wrist, I couldn’t use the remaining portion of the arm and shoulder, so they also were wasting from disuse. The hand and wrist became rigid, shriveled and contracted
I was considering a series of surgeries to improve the forearm’s condition. However, with no sensory or motor nerve supply and a weak, sensitive wrist, what was the point? The likelihood of any sustained improvement or return of function was remote.
Finally, with the insight and agreement of my orthopedic surgeon, I underwent a therapeutic amputation. Suddenly, what had been a painful, disappointing and frustrating period of my life began to improve dramatically for many reasons.
The pain decreased tremendously following the normal post-op pain and the initial, severe phantom pain. The pain and sensitivity of the damaged wrist were gone, and after 3 months, the phantom pain subsided to minimal levels.
Without the useless wrist and hand, which I had nicknamed “my rubber chicken,” I could now use my residual limb. I could carry things, push doors, brace myself, assist getting up, rub things that itched, and, most important of all, I could hug my wife and kids with both arms again. All of this was before using a prosthesis.
I had substanstially more use of my uninjured arm. This might sound strange, but my good arm had been primarily occupied in protecting and supporting the injured arm.
I could use a prosthesis. With the useless arm, I could do nothing. Worse, its very presence prevented my access to anything functional.
With my prosthesis, the list of things I could do again was staggering. Most significant by far were the improved ability to feed and dress myself, drive, tie knots, open containers, use tools, and take care of my home. I also wasted less time having to wait for someone to help me.
Although my prosthetic hand could never give me the function I had before the injury, it is light-years ahead of anything I could have hoped for with the reattached arm and hand.
Since being thrust into the world of amputation and prosthetics, my learning curve has been steep but interesting and enlightening. I have met and worked with many amputees, occupational therapists (OTs), prosthetists and others in the field. I’ve participated in, and led, a number of presentations, seminars and lectures.
A few OTs and prosthetists have contacted me about patients or directed patients to contact me. These have been patients with problems similar to my own. They had severely damaged limbs from trauma or disease and had had extensive surgeries or replants, but with little or no functional return, despite ongoing treatment and interventions. The patient or family had begun to ask questions: Why am I having serial surgery and endless treatment but no functional use? Why are parts being taken from elsewhere in my body to keep a useless limb alive? Is this all I have to look forward to?
They didn’t know where to get the information to make a rational decision or how to find better options. I have been consulted in a few of these cases. The results have been gratifying. This is similar to what I trained for and practiced for so many years. I have also learned much from this process, such as:
Little information is available to many patients regarding treatments, functional outcomes and expectations and more promising alternatives such as prostheses.
In the medical community, there is scarce information on alternatives, especially regarding prostheses. More than a little misinformation exists in this regard, based largely on obsolete data and lack of exposure to patients who have moved on successfully.
Doctors always struggle to avoid focusing on the specific injury or disease and losing focus on the patient as a whole. This tendency has worsened with the development of specialties and subspecialties within specialties.
Doctors also tend to want to feel that we have failed or given up on our patients. This is not always possible or rational. This is compounded by the previous point – seeing your patient as the extremity itself rather than the whole patient. Doctors also have difficulty giving up the battle and moving on if we experience some initial successes. This not only exhausts the doctor’s resources, but, more importantly, the patient’s.
I feel the insurance industry has caused some of this. If the surgeon knows insurance will pay many times over for serial surgeries but will not cover the patient for far less expensive prosthetic options, it can influence the decision process.
A number of poorly understood statistics exist that sometimes deter surgeons in upper-extremity cases. One stat is that 50 percent of upper-extremity amputees with prostheses don’t wear them. This is certainly not what I’ve experienced. Most of those know with prostheses wear them, especially when they need them. Some will leave them off if they’re doing nothing but watching TV, but this shouldn’t be construed as non-use.
On the issue of not wearing prosthetics, patients may not have the experience or knowledge to recognize a poorly fitting or nonfunctioning prosthesis. Patients may give up, thinking it’s their fault, or they may give up because no one knowledgeable counsels them. It is essential for upper extremity amputees to follow up with a prosthetist experienced with their level of amputation.
Too many people, even in the medical field, define a hand first by its presence or absence, second by its appearance and third by its function. My contention is that this is exactly the reverse of the order of importance.
Saving the limb a all costs is too dominant a theme with some healthcare providers. It remains a problem with lower-limb patients. Some surgeons will almost never remove a leg unless it is obviously necrotic or a life-threatening infection or cancer is present. However, there are protocols and a better consensus on when to amputate lower limbs, whereas very little consensus and effectively no protocols exist with upper-limb amputations. But the cost of retaining the limb can be astronomical, financially and emotionally, and in terms of pain, disability and frustration to the patient.
One of the Amputee Coalition’s goals is to help reduce limb loss. This is laudable, and it is obvious that this refers to the preventable loss of functional, reasonably healthy limbs. It should never be construed as keeping nonfunctional, painful and useless limbs at the expense of more comfortable and more functional prosthetic solutions.