Wearing a prosthesis is a life-long medical need. Your relationship with a prosthetist will end only when either (1) he retires, (2) he dies (bad), (3) you die (worse), (4) you move (though for some people, cross-country prosthetics is an option), (5) the relationship becomes unproductive (i.e., you “fire” the prosthetist or the prosthetist “fires” you), or (6) you grow your limb back (don’t hold your breath). Stated another way, you and your prosthetist are tied at the hip so long as you’re alive and wearing a prosthesis. I’m thus always staggered by how many people go through the prosthetist-selection process with less thought than they use to select their cell phone provider.
At one point or another in their lives, people with limb loss/difference, their parents (for their kids), or their kids (for their elderly parents) have to choose a prosthetist. Finding the right person to fit a prosthesis should be an exciting and educational experience. It’s an opportunity to meet interesting people (practitioners and patients), learn something about new technology (socket and components), and exercise control over your (or your loved one’s) future. Yet, from what I’ve seen, the majority of people with LL/D ignore this opportunity, foregoing a rigorous selection process for an approach that often results in them bouncing unhappily from facility to facility for years of their prosthetic-wearing life, or alternatively, sticking with a clearly failing relationship for objectively unfathomable periods of time.
With that in mind, let me spell out the Holy Trinity for Successful Prosthetic Care. You have to find someone who can (1) make a well-fitting socket, (2) understand (and explain) which prosthetic components are best for you, and (3) be trusted not only to guide you, but to actually listen as well. If you can satisfy two of those three factors you’re doing well. If you can nail all three you have a real good chance of achieving whatever goals you set for yourself, prosthetically speaking.
With that in mind, let me take a stab at identifying the five biggest mistakes you can make when choosing a prosthetist.
1. pick the prosthetist whose office is closest to your home
If you choose someone primarily because they’re convenient to get to, be prepared to exploit that convenience on a regular basis.
This isn’t to say that the local prosthetist is incompetent. It’s possible that of all the prosthetists in the world, the person whose office is closest to where you live is, in fact, the best and only person capable of providing your care. It’s also possible that eating a starfish will result in a fundamental transformation of your DNA such that your missing limb grows back (see paragraph 1, item (6), above). You get the point – when you elevate convenience above the Holy Trinity, odds are you’ll be doing lots of short commutes instead of fewer longer ones.
I will abashedly confess that I was guilty of this sin when I became an amputee. I chose my first prosthetist based in significant part on the fact that he was only 15 minutes from where I lived. I ended up getting lucky – he had a first-rate facility and I received excellent care there. But at a time when I should have been thinking critically and asking lots of questions, I instead defaulted to the easiest travel option.
It’s especially easy to fall into this trap because limb loss can make travel uncomfortable. By staying local, you minimize the amount of time wedged into a tight space with an ill-fitting prosthesis. To many, the thought of driving more than an hour for necessary care – especially when there’s someplace “right around the corner,” just doesn’t compute.
The longer I’ve lived with limb loss, the more people I’ve met who feel strongly enough about the Holy Trinity that they board planes or drive three to four hours to get to the right prosthetist, rather than the one who’s closest. In the interest of full disclosure, I will confess that I am now one of those people.
I live within striking distance of New York City and have access to numerous excellent facilities within a 90 minute driving radius. And yet, I choose to drive several hundred miles because I’ve elevated the Holy Trinity above geography. In all honesty, I would prefer someplace closer to home. However, after careful analysis and consideration, the best person for me at this stage in my prosthetic life happens to work farther away. But because “the fit” – and I use that term on multiple levels – is right, those long-distance treks are thankfully few and far between.
2. pick the prosthetist with the fanciest office
When we visit our prosthetist, we often end up spending a good part of the day, if not longer, there. So being surrounded by luxury seems like a somewhat reasonably way to make your selection. But if the prosthetist working in that fantastic facility can’t fit your socket, can’t match the right components to your needs, or doesn’t listen to you, you’re going to spend a lot of time in a really nice place being really upset.
When I co-owned my prosthetic facility, we started in a small space located in the basement of a tiny office building. While we tried to make it as nice as possible for our patients, there was no escaping certain realities (e.g., no natural light in any of the patient areas, limited parking, hideous linoleum floors, etc.). When patients came into the facility for a consult, I would remind them that they should not rely too much on the size of a facility or how fancy it was when deciding where to go for treatment. (A somewhat self-serving statement, given our surroundings.)
Several years later, we moved to a custom-built space that was more than triple the size of the basement office. It was a dazzling building. Instead of conducting consults in a tiny office with cheap carpeting and used furniture, we performed them in a huge room with gorgeous hardwood floors and massive glass windows through which sunlight poured for virtually the entire day. Our gait area was enormous and included custom features that you couldn’t find anywhere else in the country.
Having gone “high rent,” I continued to warn prospective patients that they should not rely too much on the size of a facility or how fancy it was when deciding where to go for treatment. (Still a somewhat self-serving statement because I knew that virtually no one, after seeing this fantastic building, was going to go anywhere else.)
Now, I’m not saying that an exquisite patient care facility should send you racing for the exit. In fact, as is often the case at so-called “destination facilities,” my partner chose to construct our space the way he did because it took into account the unique needs of our patients in innovative ways. A nice facility can be indicative of a broader approach to patient care that deserves consideration. And I’m happy to report that more and more prosthetists seem to be looking beyond securing a space that has only a narrow hallway and a few patient rooms, and are instead constructing spaces designed to enhance the overall patient experience.
But I am saying that if you let a facility’s appearance override the Holy Trinity, you’re playing prosthetic roulette. In fact, there’s an argument that when you let that happen as a patient, the disconnect between the breathtaking physical space and any prosthetic issues you experience actually leads to an unconscious irrationality that ends up impairing your care. (“I’m at this state-of-the-art facility with massage chairs in every room, complimentary monogrammed bathrobes, and Zamfir himself playing the pan pipes in the gait area to promote a soothing environment, but I can’t wear my prosthesis for more than 10 minutes without having to take it off. Fix it NOW! Yes, I may have gained 73 pounds since the last time I was here, but look around – you provide all this luxury? Give me some prosthetic luxury! Yesterday!”)
A quick aside – putting Zamfir in your gait area will repel at least as many patients as it attracts. Ditto for Kenny G. And John Tesh.
3. pick the prosthetist who has a really competent prosthetic user working in the facility
This one hits close to home for me, because I was that competent user at my own facility. It was a matter of personal pride and simultaneous guilt that I could walk well enough to sometimes influence other patients to choose our office over others.
Here’s the thing: the patient who works at the prosthetic facility represents a sample size of exactly one. And in general, that sample is severely skewed towards a demonstration of above-average ability. As one of my peers in the limb loss community said to me last fall, “Have you ever noticed how no one goes to the world’s second-best prosthetist?” With that observation in mind, remember that prosthetic-wearing employees often serve two distinct and important functions: (1) fulfilling the duties of their official position, and (2) unofficially signaling to patients and prospective patients that the prosthetist who generates these fantastic results is The World’s Greatest Prosthetist.
Unfortunately, the fact that one person can expertly use their prosthesis doesn’t have any connection to your condition and potential. Selecting a prosthetist based on this approach is akin to watching LeBron James on TV and deciding that your son – who, as an incoming senior in high school is best known not for his ability to play basketball, but rather, for eating strawberries covered in sour cream and chasing them down with pineapple juice while his fellow 17-year-old MENSA members cheer him on – should attend the same high school in Ohio as LeBron did to maximize his chances of making the NBA.
If you’re the parents of an 8 year-old cancer survivor, marveling at the skill of a 30 year-old traumatic amputee employee is an understandable emotional reaction, but it doesn’t provide a remotely rational basis for choosing that prosthetist. Perhaps the prosthetist specializes in treating only 30-35 year-old traumatic amputees whose last name begins with the letter “Q”. That may make him a fascinating psychological study, but it doesn’t make him the right person to treat your child.
There is one way you can attempt to minimize the superstar effect: ask to meet someone who that prosthetist treats whose biography reads like yours. If your child lost his leg above the knee to cancer, ask if you can talk to the parents of other AK cancer survivors so that you can at least get an “apples to apples” assessment. If you’re an older diabetic amputee, see if the prosthetist has another 60 year-old diabetic BK you can talk to when you get there. While these people are likely to be just as supportive of the prosthetist as the employee and still represent a sample size of one – both facts that you should remember – at least they’re similar to you from a clinical standpoint.
Remember, the issue isn’t whether the prosthetist you’re considering can fit Frank well, select the right components for Frank, and communicate effectively with Frank. The question is can he do all of those things for you.
4. pick the first prosthetist you visit
This has always mystified me.
When you select a pre-school for your child, you don’t send them to the toothless, 37-year-old grandmother with 4 abused pit bulls roaming free in the background playground that’s dedicated to “The Wonders of Rust” (so says the handwritten sign next to the slide) that your Uncle Stuart – the same Uncle Stuart who starts his day by pouring bourbon into his cornflakes – recommends without first also visiting the local Montessori and YMCA offerings. Hell, we all know people who spend hours on the internet price shopping to ensure that they save an extra $10 bucks on a $500 TV.
So when confronted with selecting the person who will restore your missing limb, the person who may be most directly responsible for allowing you to live a life of independence and dignity, why do so many of the patients I’ve talked to end up at the first place they visit? I don’t have an easy answer for this.
Sometimes, I suspect, it happens because they get referred there by another individual with LL/D, and that person ends up influencing the prospective patient in much the same way that the hypothetical employee in 3, above, does. It could also be because people – especially new amputees – are so overwhelmed emotionally that going into even one facility is more than they can handle psychologically, so the first place becomes the last place unless it’s the equivalent of the preschool deathtrap described earlier. Or maybe people are just lazy. I don’t know for sure, but I can tell you firsthand that this is frighteningly common.
5. pick the nicest prosthetist and ignore the results
I don’t mean to suggest that having a wonderful relationship with your prosthetist is unnecessary. But I have listened to patients provide different versions of the following story more times than I can recount:
“I’ve been going to my prosthetist for seven years now. I haven’t been able to get a comfortable fit. Ever. I only wear my prosthesis 4-5 hours a day. I go in there all the time and it’s not getting any better. I guess I’m a [difficult fit] [have unusual volume fluctuation] [am not tough enough to wear the prosthesis] [insert self-defeating rationalization that best suits your temperament here]. He’s working so hard and is a really great guy. I’m sure he’ll eventually figure it out.”
If I were in the mental health field, I’m certain that I could find similarities between Stockholm Syndrome and the patient who shares that story. There is no earthly explanation for why human beings would continually and voluntarily subject themselves to repeated negative stimuli and feedback – feedback they get with every step they take or every time they reach for an object with their prosthetic arm/hand – and not only accept it, but speak of the person inflicting that pain (unintentionally, of course) on them with the kinds of words reserved for close friends.
Hopefully your prosthetist is your friend. But I’m here to remind you that it’s not a requirement or necessarily even in the top 10 things you should be looking for. The third part of the Holy Trinity is finding someone who can guide you and who can listen to you, not finding a soul mate. All this means is that you have to have the ability to communicate comfortably, honestly, and openly with him/her and that it’s a two-way street when you talk.
For example, if you’re aware of a device from Company X that you’re interested in wearing but your prosthetist dismisses your inquiry because he fits prosthetic feet exclusively from Company Y and prosthetic knees exclusively from Company Z, you’ve got an issue. If Company X’s product is wrong for you, he should at least be able to tell you why, clearly and in detail. If the answer is just, “Because, I don’t like their products,” you need to seriously evaluate whose interests your prosthetist is representing. Maybe he isn’t certified to fit Product Y. Perhaps he consults for Company Z. You have the right to understand what’s driving clinical decisions that affect your life, and if you can’t get answers (or the answers always end up with a finger pointed politely but firmly in your direction), I respectfully submit that you’re most likely in the wrong facility, even though your prosthetist is a “great guy” or “great gal.”
Your prosthetist works for you – not the other way around. It really is that simple. The relationship is, in the end, a transactional one. You – through your insurance company/Medicare/Medicaid – pay that person to provide services. He/she gets paid to deliver them.
If your prosthetist is getting paid but you can’t use your prosthesis, you need to examine your value system: are you more interested in remaining friendly with that person or in getting what you paid for? Losing years of physical activity just because you like someone means that you’re (a) a caring person, and (b) lost.
For those of you who think that my conclusion is dismissive or harsh, ask yourself the following question: would you tolerate the same results from your car mechanic, financial advisor, or attorney? If the answer is “no,” then you need to figure out why you hold all of those people – none of whom impacts your day-to-day life as much as your prosthetist – to a higher standard than the person who is supposed to give you a functional replacement limb.
Remember the Holy Trinity. And avoid the top five mistakes you can make when selecting a prosthetist to pave a road of prosthetic happiness.
Have I missed anything? Should my “top 5” list really be a “top 10”? Feel free to comment with your thoughts.