the five mistakes to avoid when selecting your prosthetist


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.

18 thoughts on “the five mistakes to avoid when selecting your prosthetist

  1. Great article! I’ve had some problems over the last few years with prosthetists myself. Being a bilateral knee disarticulation amputee, it’s hard to find someone who understands my needs, and doesn’t just fly off on a tangent and design a standard AK socket for me.

    two things that I can suggest. One, is to keep an eye on any assistants that work for the prosthetist. If they end up doing most of the work, and the prosthetist just pops in to see how are things going or to do any final corrections to the assistant’s work, then I would be careful. Especially since in my case, one assistant put the sockets on the wrong prosthetics, and did not understand what he did even though I told him what happened.

    Two, would be to make sure the prosthetist has some sort of imagination. You might have an idea of what type of socket would be good for you, and you might bring in pictures of other amputees with similar amputations to show him the socket designs. But if the prosthetist doesn’t have the imagination or the skill to understand other people’s designs to try to apply certain aspects to your own prosthetics.

    Well, maybe a third thing too. The prosthetist has to listen to the amputee’s concerns. A prosthetist shouldn’t think of himself as being the only one who knows how prosthetics work, and that the amputee, also has some experience in the subject. I had one prosthetist that continued to tell me that the difference in length of my stumps was due to the way my hips were formed and due to the way I sat, even though I had x-rays proving that one leg was shorter than the other.

    • Dan – I like the suggestion that patients try and get a handle on how much or how little the prosthetist, as opposed to lab techs, deals with the patient directly. There are some really gifted lab techs out there who do excellent work, but a prosthetist shouldn’t be abdicating his patient interactions to those individuals.

      Your second and third points, I think, are along the same lines as the third element of what I’m calling the Holy Trinity – you need a prosthetist who will LISTEN to you. And by listen, I don’t mean just pay attention and then do his own thing. I mean he needs to actually hear what you have to say and attempt to integrate it into his worldview. A prosthetist who really listens will, I suspect, be more receptive to imaginative solutions than a more close-minded individual would be.

      Thanks for the input!

    • First, you are spot-on about how a minor irritation is magnified in high activity folks. I’ve got the pics to prove that one.

      >>> So, in conclusion, I’ve always found this group of people to be the LEAST likely to just accept injuries because of loyalty or sponsorships or other factors. I’d be interested in your thoughts on that last point. <<<

      I don't think I have the experience with top level athletes to make a definitive statement, but I know of at least one high profile athlete who, immho, does think they have the best prosthetist ever despite having significant issues post race. I do think in some cases sponsorship increases loyalty, with the promise things will get better because the problem is always being actively worked on.

      In general, though, you are correct, an athlete will demand better prosthetics because they cannot succeed without them. Over time problems will force them to seek someone else, especially if they have competitors leaving them in the dust.

      – Richard

      I am careful even now not to let my enthusiasm color my opinion, but I would say in gene

  2. Excellent post!

    It is all too easy to develop a loyalty to a prosthetist, because many CPs are very caring and want the best for their patients. I believe most will do a competent job for patients of average activity, but when faced with high activity amputees, they often fall short. It take much more time and expense to handle individuals who refuse to be limited by their disability.

    I recently had to make a change for this very reason and it was tough to do. I am a runner, and found I was lucky to run 2 weeks without some issue sidelining me for up to 10 days for my skin to heal or swelling to go down. Since changing CPs I have yet to have a single such issue and my residual has never looked better.

    It is frustrating to me to see high profile athletes accepting injuries because of loyalty or other ties, when I know it simply does not have to be this way from my own personal experience. Never accept ‘good enough,’ because it is NOT good enough.

    – Richard

    • Richard – you’re correct that high-end activity exposes the limitations of socket fit rather quickly. The minor issue that could cause slight irritation over a day becomes a quarter-sized blister when running 3 miles.

      I’ve also observed, not coincidentally, that high-end athletes probably subscribe to the principles of the Holy Trinity more than virtually any other kind of patient. They know what they want, they’re intimately familiar with their own physiology and biomechanics, and they’re often forced to jury-rig prosthetic solutions when things happen during races, all of which makes them better able to engage their prosthetist in something closer to a peer-to-peer discussion, as opposed to the provider-patient dynamic that’s much more common.

      So, in conclusion, I’ve always found this group of people to be the LEAST likely to just accept injuries because of loyalty or sponsorships or other factors. I’d be interested in your thoughts on that last point.

      But “Never accept ‘good enough'” is an excellent way to distill my “fifth mistake to avoid” into a quick catchphrase. Wish I’d thought of it. Much catchier than what I wrote.

      Thanks so much for your input!

      Dave

  3. I am a fresh amputee as of Dec. 14, 2010 and I have been in the dark on many things. I have my first prosthesis and I don’t like it. I do have faith in the prosthetist but am curious about looking elsewhere.
    The reason for my unhappiness with this is simple… I know that it’s my first and temporary, but, no matter what adjustments are made, it hurts horribly. My amputation was by choice due to a nerve disease and I refuse to give up on this. I also know that I will likely have some pain as I’m still a newb but this is too much.
    Thank you for this article… I’m going shopping.

    ~Corey

  4. Corey – it sounds like you know that given the dramatic volume and shape changes in your residual limb post-op, the fit of a temporary prosthesis is very different than when you get your permanent. It’s a continuous chase to try and keep the socket fit up-to-date as your limb matures.

    But separate and apart from that, if you’ve got concerns, issues, or questions, it’s smart of you to “go shopping.” Put together a list of “key questions” you have and ask every prosthetist you meet to answer them. Then you’ve got a baseline off of which to compare answers.

    Maybe this process will lead you back where you started, with the increased confidence that you’ve made the right initial choice. Maybe it takes you somewhere different. In either case, resolving those questions BEFORE getting your permanent prosthesis is a real smart thing to do.

    Good luck! And thanks for reading!

    Dave

  5. This is sound advice. Exactly the kind of thing I tell new Amputees when I meet them.

    I have been an Amputee for 35 years (a result of Cancer at 15) & wish this advice had been available then. It would have saved some pain & heartache. I am glaf it is available now. Keep up the good work.

  6. Pingback: the power of listening « less is more

  7. I’ve been an AK for 23 years. Car accident. I don’t think my limb is so different from anyone else’s, but I have SERIOUS problems getting fit. I mean, it’s been a year and a half of weekly visits to my prosthetist and I still don’t have a final. I have always had this problem. So I hate giving up my current leg at the time to get a new one. How long should it really take to get a final leg? I’m not asking for anything out of the ordinary during my appointments. I’ve tried prosthetists from all over the country. Illinois, Oklahoma, California. I am active, but not an athlete, although I am always wondering how any AK could be an athlete because of my experience with socket fit. I workout regularly and ride a stationary bike. I could literally keep riding if my leg weren’t sweating and sliding off. Is it possible to actually have a socket that fits so well that I won’t have pain, can walk well without my muscles burning from a tight socket (not allowing room for them to fire up), not rotate on me, and could actually ride a bike longer without my leg sliding off? Please advise me.

    • Cheryl – sorry for the delay in responding to your comment. In answer to your question, “how long should it take?”, I’m not sure there’s an easy answer. But if you’ve been going for 18 months of basically weekly visits and you’re still not comfortable in your socket, that would seem to suggest to me – absent any other unusual circumstances – that it’s just not working out with your current prosthetist, despite the fact that he/she may be working their tail off to assist you.

      In answer to your second question – is it possible to have a socket that fits so well that you can walk pain-free, not have socket rotation, and ride a bike?”, the answer (absent some truly remarkable aspect of your clinical condition) is “yes, you can.” I will say, however, that with respect to riding a stationary bike, it has always been my experience that doing it in your everyday socket doesn’t work so well, because my socket would get caught on the bike seat and I’d end up losing suction. Customizing the bike seat and/or having a “cycling socket” is obviously more optimal, though both likely come with costs that insurance won’t cover.

      You sound like an experienced prosthetic wearer who understands exactly what your problems are. The best advice I can give you is to set goals for yourself and your prosthetist that are clear to both of you. If you end up looking elsewhere for care, interview several prosthetists and ask to speak to patients of theirs who may engage in the same kinds of activities as you.

      I understand your frustration and wish I had a silver bullet for you. But demanding the most from the person getting paid to provide you prosthetic care is not only your right as a patient, it’s essential. If you don’t hold them to the highest possible standards, why should they?

    • Thanks for that. I see him again tomorrow. My fiancé wanted to come with on this next visit, but I feared he’d yell at him, so won’t be joining me this time. I need to not be afraid to say I’m not happy with the progress. Thanks for all the points to consider.

  8. I am a prosthetist in Indiana and the comments on your site are a reminder to always listen to the patient. Prosthetics is a delicate balance of art and science and it is essential that the amputee is informed and educated throughout the fitting process. Please feel free to contact me at any time to get a prosthetist perspective on any number of issues – warm regards. MJH (IndianaProsthetics.com)

  9. Thank you sooooo much for your article! It has served to re-inforce what I was already thinking… and to be the tipping point of my decision making! As of July 2010, I am a right side BK amputee. Mine was due to Diabetes and extremely poor circulation in the limb. When I first got my “temp,” and tried to walk on it, it literally hurt like Hell!!! My prosthetist kept telling me over and over that my stump would toughen up and I would get used to it! BULL!!!!!!! Again, I say, BULL!!!!!!!!!!!!!!!!!!!!!!!!! Despite this adjustment and that adjustment being made… “pads” being put here and there inside the cup… grinding on the inside of my cup… and, so on… my prosthetic hurts me worse now than it did when I first started wearing it!!! Oh… forgot to mention that my stump has shrunk so much that I now have to wear 15 to 18 layers of socks to prevent the socket from “wobbeling” all over the place and keep my stump from “bottoming out” in my cup!!! BTW… almost also forgot to mention that this idiot used a 99% worn out… USED foot… but charged Medicare FULL PRICE FOR A NEW ONE!!!!!!!!!!!!!!!!!!!!! Anyway… now, I can only walk about 15 to 20 yards before I HAVE TO sit down and rest for a bit because of my stump and my left leg (the “good” one) are KILLING me!! So, I spend a lot of my day in the bed… with my prosthetic sitting next to the bed! I simply CANNOT take the pain anymore!!!!! So, I began reading and researching on the web. After the things I had read (said by prosthetist, doctors, health care workers and most importantly… patients), I had almost made up my mind that I was going to hunt down a different and better researched prosthetist to hopefully make me a new prosthetic… assuming Medicare will pay for another one this soon! And, this article was the tipping point for me!!! I WILL dilligently seek out a new prosthetist… one who knows what he/she is doing… and, will fit me for a prosthetic that fits COMFORTABLY… and PAINLESSLY!!! Plus… will make my new leg from 100% BRAND NEW… right for ME parts!!!!! Oh… and, he/she won’t be the nearest one to me… like this one was (article 1 above)… won’t necessarily have a prosthetist who has a really competent prosthetic user working in the facility… like this one did (article 2 above)… pick the first prosthetist I visit… like I did this time (article 4 above)… and, I DARN SURE WON’T pick the nicest prosthetist and ignore the results… like I have been doing… like an IDIOT… this time (article 5 above)!!!!!!!!!!!!!! Again… thank you sooooo very much!!!!!

    • Robert – glad you found this helpful! And I’m sorry that you’ve been dealing with so many problems for 2+ years now.

      One thing you mention that is particularly disturbing, if true, is the prosthetist’s delivering you a used foot. Prosthetists are not permitted to deliver used items to Medicare beneficiaries and bill for them as new. If that truly is the case, you may want to alert Medicare.

      As far as Medicare knows, the foot you now have was brand new when you received it. This could impact your ability to get your next prosthetic foot approved if Medicare believes – incorrectly, based on the previous claim – that you’re walking on a brand new foot delivered to you around 2 years ago.

      As a person who co-owned a prosthetic company in a past life, I want to make clear that I don’t think crying “fraud” whenever you have a problem with your prosthetist is appropriate. But if the facts are as you describe them in your comment above and it were me wearing a used foot, I’d be picking up the phone.

      With respect to the rest of your comment, it sounds like you’ve got a well-thought-out plan in place to identify exactly what you need going forward. Best of luck with the search! And thanks for reading less is more!

  10. Hello, I found this article when looking online for a new prosthetist. I am a right hip disarticulate but am very very active and my leg is constantly breaking and my dr is not making improvements or exploring other options. Sorry but having a leg break when walking on a beach in Nassau, Bahamas or when I’m in the middle of planting bushes in my yard or out with friends just is becoming toooooo difficult! How do I know that the prosthetist I will be visiting are qualified for this high of an amputation and can really be innovative and step outside of the norm so we can get a leg that doesn’t constantly come “unglued”? Any ideas? I’m concerned for my back and alignment being in only 29 and have a long life left (been an amputee for 24 years)

    • Ashly – before answering your excellent question … purely in the “it’s a very small world” category, I took a look at your blog and realized that you were receiving treatment at Sloan Kettering in NYC at the same time my mother was working there as an administrator.

      Now to your question. As you no doubt know, the hip disarticulation level of amputation is relatively rare, and the percentage of hip disarticulation amputees who choose to wear a prosthesis is low within that group of people. As a result, it would be fair to assume that the majority of prosthetists don’t treat many (or any) hip disarticulation amputees.

      One good way to try to get a feel for a prosthetist’s experience with hip disartics is to interview the prosthetist about their past experience fitting them. See if they can articulate a specific philosophy that they have for fabricating that kind of prosthesis and training patients to use them effectively. The more specific they can be and the more specific examples they have of treating that level of amputation, the more you can assume that their claims of hip disartic “expertise” may be valid.

      Equally important, ask to speak to the hip disarticulation patients that the prosthetist currently cares for. If a single prosthetist can refer you to multiple hip disarticulation patients that he/she is treating today, that’s a good sign that they really do have the experience you’re looking for. Given your history, you could even go one step further and ask for how many hip disarticulation amputees under the age of 35 they’ve treated and speak specifically to those individuals, whose lifestyle/activity level are more likely to match yours.

      It’s not the most scientific method, but it does give you something more than vague claims of expertise by the prosthetist and broad, unverifiable statements of amazing clinical outcomes. As you interview multiple prosthetists asking these same questions and speaking to the patients they refer you to (if any), you’ll start to develop a pretty good nose for who REALLY is doing this kind of work consistently and who treats a hip disarticulation amputee once every 4 years.

      Dave

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