how to claim your freedom

My friend Peg wrote a thoughtful post last week as the 8th anniversary of her amputation approached. After countless surgeries and more than a year after the traumatic incident that left her with a severely damaged limb, she elected to amputate her leg below the knee. The surgery took place on July 3rd. The fact that she spent her first full day as an amputee on Independence Day might at first seem depressingly ironic.

Moving from a full complement of limbs to something less than that during the one time of year when Americans celebrate their freedom sounds more like the hackneyed script of a Disney movie than a true-life story. (In case you haven’t heard, here’s the story arc for every Disney film ever made: warm opening; sudden, life-changing trauma; pain and pathos as central character climbs out of depths of despair in tortured steps; triumphant resolution that sets the universe in order. Never again do you have to sit through one of those movies. You can thank me (and you should) later.) Mention the word “amputee” to people and their reflexive reaction is limitation, pain, and dependence. But for many people with limb loss/difference, that is no longer the case. Particularly for those individuals suffering from injury, disease, or who are born with a limb difference, amputation is the event that frees them to live fuller, more productive, and more active lives.

Unfortunately, bridging the emotional and intellectual chasm that separates reality from perception takes a kind of faith and courage that many people understandably lack.

I once sat in a room with a man who had an external fixater screwed into the flesh of his leg to try and repair a non-union following a gruesome accident. He had been wearing the cage for close to 18 months, taking a battery of antibiotics, and walking on crutches without any appreciable improvement in his condition. And he came to our facility not to see what options were available to him, but rather, to reinforce his limb salvage course of treatment.

If he remained otherwise healthy, this is a man who still had at least 15 to 20 years of active live in front of him. It was clear early on in our conversation that amputation would have him walking faster, better, and sooner than he ever would if he continued down his current path. But the patient wasn’t there to listen. Instead, he performed an extensive monologue about how he had learned to accept the fact that he had no physical life to speak of – and hadn’t for close to 2 years – because he needed to do everything he could to save his leg.

Similarly, I remember a young woman who lost the big and second toes on her right foot when she suffered severe frostbite after leaving a bag of ice on for too long following a minor sports injury. She had no ability to stabilize herself when she walked, her foot functioning about as well as a sailboat without a rudder or keel. Thinking that she had come to a prosthetic facility to explore prosthetic options, we told her how, as a below-knee amputee, she would regain her ability to play all the sports that had defined who she was as a still-active woman in her mid-20’s. Taken aback, she explained how she only wanted to get something that would fill her shoe appropriately. We responded – probably inappropriately, given her mental health needs – that this would merely permit her to walk with a pronounced limp, while simultaneously precluding participation in any future high-end activities.

In both instances we were faced with the following quandary: we knew that amputation would provide these patients with a better quality of life in the long and short term, but neither of them were equipped to deal with that reality. We knew that prosthetic technology had advanced to the point where it would open new doors for then, but the catch was that they had to cut off a limb to access that benefit.

I don’t blame External Fixation Man or Ice Bag Woman for rejecting/ignoring that reality. The thought of voluntarily disfiguring oneself and becoming a “Disabled Person” is more than most people can swallow. And that’s true even when they are limping/crutching/wheeling themselves around. Because even in that condition, they’re still whole. In contrast, the carbon graphite and titanium that I wear like a badge of honor flags my “disability”, and represents everything that’s alien and terrifying to the person holding on to their non-functioning limb like grim death.

So, the desire to remain whole and crippled, even in the face of overwhelming objective evidence that amputation can provide a better future, is basic human psychology and we don’t need to explore it further, right?

There’s actually another piece to this just under the radar that’s equally important.

In the last 10-15 years, prosthetic technologies have undergone a sea change in sophistication and function. When I lost my leg at the end of 1996, microprocessor-controlled lower extremity joints were not, as a practical matter, part of the U.S. health care marketplace. Hydraulic joints, which had been around for close to 30 years at that time, were still the most advanced option. Now, only a decade and a half later, we’ve already blasted through a complete generation of microprocessor-controlled knees, and have moved beyond them into powered joints – knees and feet that use motors to actively control the user’s knee or ankle/foot system, restoring them to a higher level of function more quickly than ever.

But here’s the rub: the gap between the patient’s prosthetist, doctor, and physical therapist prevents anyone from understanding this. In the U.S., the surgeon who amputates the limb, the prosthetist who fits the prostheses on the patient, and the physical therapist who assists with rehabilitation operate on adjacent but separate islands. They float bottled messages to each other when necessary, but rarely take the time to sail off their home base to coordinate their care, leading to the following three-headed monster.

Scary-But-True-Fact #1: at least 90% of physicians dealing with amputees know nothing about modern prosthetics. Nothing. What the prosthetist down the street does with the patient after the amputation might as well be happening on a space station in a distant galaxy.

We requested prescriptions from doctors every day in connection with our patients’ prosthetic care. Those doctors included some of the most skilled orthopedic surgeons not only in New York, but the world. And if I threw my prosthesis on their desk and asked them to tell me something about it, they wouldn’t have the first idea where to begin. Their brains would have stammering “Homina-homina-homina-homina” Jackie Gleason-in-The Honeymooners-style if that situation had ever presented itself.

Scary-But-True Fact #2: The other 10% of doctors only know what they’ve read in textbooks that, for the most part, reflect the state of prosthetics before 2000. All of the current advances that Peg and I enjoy are completely alien to them.

So, to give just one example, doctors still perform Symes amputations because, as the first website appearing in Google search results for the term “Symes Amputation” proudly proclaims, “[t]he Symes amputation can be one of the best amputation of the lower extremity. When it is done right, it creates an excellent end-bearing stump and  allows for a functionally most satisfactory prosthesis.” To which, virtually every prosthetist and knowledgeable patient will respond, “Mmmmmmmmmmmm, not so much.”

A Symes amputation leaves the patient with their full tibia. Not only does it permit the patient to end bear, so the story goes, it also gives them a longer lever arm below the knee. And that’s important because it allows the patient to control the prosthesis more effectively and with less energy. Make this argument to virtually any physician in the United States and they will give you a knowing look and nod wisely as their brains race madly to recall the few weeks in med school they spent covering the topic back in 1983. (If you wanted to be cynical – as I sometimes am – you might also point out that a Symes amputation takes less time for a doctor to perform than a typical below-knee amputation. So from an economic perspective, a doctor can make more money due to his ability to maximize surgical volume with a Symes amputation. I don’t believe that doctors opt for an inferior (see below) surgery for that reason, but I do think that if they believe the technique represents an appropriate standard of care, all other things being equal, they’ll gravitate towards it.)

The problem is that this rationale holds less and less true as prosthetic feet become increasingly dynamic, lightweight, and intelligent. Moreover, the patient with a Symes amputation can’t receive these newer and better prosthetic feet because their residual limb is so long that they don’t have enough space between the end of their socket and the ground to use them. Finally, even the sleekest Symes sockets are bulky and virtually impossible to cover cosmetically because they can’t be fabricated in a way that looks anatomical. In short, aside from giving the patient the ability to end bear, the Symes amputation offers little to nothing of value to an amputee in the 21st century.

But amputate mid-tibia, and all of a sudden, myriad options are on the table: feet with vertical shock pylons; lighter-weight carbon graphite feet with dynamic energy return; microprocessor-controlled feet; powered prosthetic feet.

All of this flows from the fact that the textbook first published at least a quarter of century ago that the surgeon relied upon for the lion’s share of her prosthetic knowledge has little to no information about new prosthetic technologies.

Scary-But-True-Fact #3: because of 1 and 2, doctors – particularly vascular surgeons and orthopedic surgeons – still view amputation as a failure: a failure to preserve the limb; a failure to make their patient whole; a failure to keep them from becoming disabled. When External Fixation Man and Ice Bag Woman materialize before them, physicians talk about limb salvage and the extreme measures they can pursue to keep them “whole”, instead of putting amputation out on the table as a viable option deserving of real consideration.

Now, I’m not saying that doctors should be telling everyone with a limb problem that the best option is to hack it off. But I am saying that the medical profession does a lousy job of educating patients about the relative risks and benefits of limb salvage versus amputation.

As I stared at Ice Bag Woman, realizing that she was going to keep a disfigured, entirely non-functional foot rather than reclaim a full and complete life that was sitting right in front of her, begging to be claimed, I wanted to scream, “What the [expletive deleted]? Don’t you get it? Just look around you at the patients in this place!” But I checked the thought, reminding myself that “she just isn’t ready yet.” Which was true. But that’s not just a result of individual psychology. It’s also a function of the medical community’s inability to understand what modern life with limb loss really looks like, and the resulting failure to share that vision with patients.

Had her surgeon told her, “Hey, Ice Bag Woman, this is going to be difficult for you to hear, but you need to think about it – if we do a below-knee amputation, you’re going to avoid a lifetime of pain and limitation and be up and walking again within 30 days after the surgery,” she would have come to us with a different foundation to build on. That doesn’t mean that she would have made a different decision that day, but it would have at least allowed for that possibility.

While I’ve never spoken at great length about this with Peg, I know that at the same time she mourns the loss of her leg, she also  believes that amputating it gave her her life back. She made a choice  to reclaim her freedom.

Sometimes,  the path to independence requires us to cut our ties with the things that we once thought we couldn’t live without.

2 thoughts on “how to claim your freedom

  1. Very well said Dave. I agree with you totally. Docs are clueless concerning prosthetics. Only after suffering through saving my foot for close to a month did the ortho doc inform me that an amputation would be my best outcome.

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