As Prosthetics Improve, Amputees Face New Choices
NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Dedicated runner and family doctor Tom White coped for years with the consequences of a traffic accident, but over time, his left leg gave him more and more trouble and pain, to the point where he decided to have it amputated.
It wasn't a matter of life or death but of a better life. As it happened, that same day he saw a copy of Runner's World magazine that featured a picture of Amy Palmiero-Winters and her new high-tech prosthesis that she wore when she finished the Chicago marathon in just a little over three hours.
Tom had some questions for Amy, and he joins us on the line from his office in Buena Vista, Colorado. Tom, thanks very much for being with us.
DR. TOM WHITE: Thank you very much.
CONAN: And Amy Palmiero-Winters joins us by smartphone from Hicksville, Long Island, where she's program director at a prosthetics clinic called A Step Ahead. Nice to have you on the program.
AMY PALMIERO-WINTERS: Thank you for having me.
CONAN: Tom, what did you want to know?
WHITE: Well, I wanted to know how much better my life could be if I got rid of the crooked, painful disability leg that I had.
CONAN: And what did she tell you? Amy, what did you say?
PALMIERO-WINTERS: Actually, I mean, I have to say hi Tom, it's been a little while since we talked, and I know Tom has done absolutely amazing things since having his surgery. And basically I can't ever tell anybody what to do, but I can always give them the advice which I gave myself, and pretty much it was: Are you happy where you're at now?
And I know in my case, I wasn't happy, and it was an absolutely miserable life. And so basically it was - the biggest decision was are you happy.
WHITE: Yeah, I would have to agree that that was exactly what Amy had shared with me, and that was the thing that was able to make me make the decision to do an amputation because I knew where I was at, I was not happy, and I could see no future or no possibility for things getting better with my life kind of closing in around me with a leg that was causing me daily pain and keeping me from doing the things I wanted to do.
CONAN: But let me call you Dr. White at this point. Aren't you trained to say wait a minute, you're throwing away perfectly good leg here?
WHITE: Yeah, I think that that's a really important question. I think the whole concept of an amputation being therapeutic or an improvement is really quite a bold step and one that more and more, fortunately, the medical profession is starting to understand.
I think amputation often has been considered a failure or a last resort, and I think when I saw what Amy was doing with her amputation and her prosthetic, it made me realize that there was a completely different paradigm at work and that, you know, sometimes you have to realize that, you know, the malfunctioning biologic leg that you have that's damaged is inferior to, in this case, you know, carbon fiber and titanium.
CONAN: Amy Palmiero-Winters, you had to have come to that point, too, but you didn't have you to turn to for advice.
PALMIERO-WINTERS: No, and that's why I'm very happy to help others. Like I said, I can't make the decision for them, but when I had to make my decision, I was all by myself, and initially when I had my accident, the first thing that they wanted to do was amputate my leg, but it was my choice to continue to salvage what I had.
And, you know, three years down the road, the doctors looked at me and said we're really sorry that you had to go through this. But I actually had to go through all of that to be OK with where I was going next. And it wasn't a sign of failure. It was to me a sign of moving on, and moving on with my life and getting back to the person that I was.
And once I had the amputation done, the people who were closest to me looked at me and said wow you were really miserable for the last three years. And it's not a sign of failure. It's not that technology is going to make me better. It's - it was that what I had leftover from my accident was so damaged and mangled and useless that it was limiting my daily life, and it was limiting who I was. And it was just taking its toll on me mentally and physically and putting me daily in an immense amount of pain.
And when I woke up that day in the hospital after my leg was amputated, I knew that I had made the right decision, and it was like a weight that I can't even imagine was lifted off my shoulders. I knew that if it didn't get any better than that day that it was the right decision. It was the best thing that I had done for myself and for my life.
And now I'm a mother. I have two beautiful children. I work fulltime, and I get to enjoy and do the things that I love to do. And after we had done that article, which is kind of what's bringing us to this point today, I did read some of the comments from other amputees who have lost limbs and who wear prosthetics.
And to them, they can't understand why we've gotten to this decision. And I am fortunate, and I think Tom's very fortunate, as well. We have very good prosthetic fits. Wearing a prosthetic isn't easy every day, but we are very fortunate that we can live our lives to the fullest.
CONAN: And there are a couple of articles we mentioned in Runner's World. There was also a piece in the New York Times, "A Once Unthinkable Choice for Amputees" earlier this month. Reporter Alexis Okeowo, I'm probably mispronouncing her name, but anyway, that's where we saw the story for the first time. Tom White, when was the first time you realized that you made the right decision after the amputation?
WHITE: I had the same experience that Amy did. In the hospital, I knew that I had made the right decision. I never really had any serious misgivings throughout the process. That's not saying that there weren't some rough times. I remember feeling a little bit of hopelessness come in when I very - the first time I ever put any weight on my prosthesis because it was not comfortable.
Fortunately, I plugged into the network that I had developed of other amputees, you know, Amy Palmiero, Sarah Reinertsen is another one, and those people were able to give me very good advice and guidance, for example, Tom, a lower-leg prosthesis is not going to be comfortable for one year.
And the other good advice, the thing that I've learned, is that a prosthesis is not going to be second-nature for two years. And so I pass that advice on to other amputees all the time, that, you know, these things, they - it takes work, and you have to adapt to it.
My prosthetist, Chris Jones at Rebound Prosthetics in Denver, one of the first things he told me was, Tom, these things don't walk themselves. And that was very a profound statement because you can't go into it thinking that it's all going to be hunky-dory and fixed, and you're going to walk out of there normal. No, you've got to work at it every day. It gets better and better, but you've got to work at it.
CONAN: And how long was it before you could go back and run five miles?
WHITE: Well, you know, I kind of - I put the onus on myself a little bit because I said on national television, you know, on the day I was getting my prosthetic, that I would run the New York marathon the next year, and that put some pressure on me. And I was able to run a marathon 11 months after I got my prosthesis, but I don't know that that's necessarily the norm at all.
But it definitely was many months, more than six months, before I could even think about, you know, taking a running step.
CONAN: Any regrets?
WHITE: I have no regrets whatsoever. I absolutely don't feel that I'm disabled at all, and I can do, you know, everything that I could do before, you know, with my particular disability and my particular equipment.
CONAN: Tom White, thanks very much for your time today. We'll let you get back to work.
WHITE: Thank you so much, I appreciate it.
CONAN: Dr. Tom White joined us from his office in Buena Vista, Colorado. If you're an amputee, call and tell us about your choices. Our phone number is 800-989-8255. Email us, email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Still with us is Amy Palmiero-Winters, who's an elite ultra-marathon runner, the mother of two and program director at A Step Ahead, a prosthetics clinic in Hicksville, Long Island. And we already have a caller on the line. This is Carol(ph), Carol with us from Riverside in California.
CAROL: Hi, good afternoon.
CONAN: Go ahead, please.
PALMIERO-WINTERS: Hi, Carol.
CAROL: I have for a couple of years been considering getting a lower-leg prosthesis because I have an ankle and foot that are basically irreparable. And I was wondering: How much do you - how much change does the loss of blood volume that you have make in your overall, you know, fitness? I guess not much that you guys are running ultra-marathons and things.
PALMIERO-WINTERS: I can honestly say I've always wondered if something did change. I know that there are statistics out there. There has been research. There are studies. And I'm sure, you know, somebody as brilliant as Hugh Herr could tell you the scientific breakup behind it.
I do know that when I did have my amputation, I always - as odd as it seems, I always felt like I would - just ran a little hotter when I did my exercising. Everything - I mean, I was a runner before I lost my leg, and I right now, I do cross-fit every morning. I have two little kids I raise on my own, and I don't have anything that kind of sets me back or limits me because of the prosthetic.
CAROL: Wow, that's fabulous. I'm still in the thinking stage here, but that gives me more to think about. Thank you very much.
CONAN: What gives you - Carol, before you go, what gives you pause?
CAROL: I'm just not quite ready to say goodbye yet. I can still get by with a brace, but I can't run.
CONAN: And how important is that to you?
PALMIERO-WINTERS: And you know what? That's...
CAROL: Go ahead.
CONAN: Go ahead, Amy.
PALMIERO-WINTERS: I mean, that's a huge decision and for someone who's not facing that decision, (technical difficulty) but that's a huge decision because once it's gone, it's gone forever. And, you know, there's a lot of people that I meet who don't want to run. And so just having an amputation to run is really not a reasonable, you know, a reasonable tool to go by. It's your quality of life. And so - but it's a huge decision.
CAROL: Yeah, I'd like to be able to get back to doing agility with my dogs.
CONAN: Yeah, I could see why that might be important. I can see that. Good luck, Carol.
CAROL: Thank you so much.
CONAN: We're going to continue the conversation with Amy Palmiero-Winters, and we'd also like to hear from those of you who are amputees. How has technology changed things, and what are your options? And those of you who are considering, we also heard Amy Palmiero-Winters make a reference to Dr. Hugh Herr. He's going to join us when we come back from a short break. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. We're talking about the growing number of amputees making a once unheard-of choice. Instead of saving as much of a healthy limb as possible, many opt to remove the leg up to the knee. Improved prosthetics allow them to walk, run, live their lives again, much of it thanks to remarkable advances in technology.
We'll talk with the head of the head of the biomechatronics research group at MIT in just a moment. Right now we're talking with Amy Palmiero-Winters, an ultra-marathon runner, a world record-holder, also an amputee. She was profiled in a recent piece in the New York Times that brought our attention to this story. You can find a link to that article at our website, go to npr.org.
If you're an amputee, call and tell us about your choices, 800-989-8255. Email firstname.lastname@example.org. And now let's introduce Dr. Hugh Herr, director of the biomechatronics research group at MIT Media Lab. He and his team create the bionic prosthetics that feel and act like biological limbs. He joins us from a studio at MIT. Thanks very much for being with us today.
DR. HUGH HERR: Oh, my pleasure Neal, thank you.
CONAN: And this is a personal issue for you.
HERR: It is. I - both of my legs are amputated below the knee. I was in a mountain-climbing accident in New Hampshire in 1982 and suffered frostbite. And after months of effort, my surgical team gave up the effort to save my biological limbs, and they were amputated.
CONAN: Were you involved in this business before your accident?
HERR: I was not. In fact, I was a horrible, very poor student. I got many C's and D's during middle and high school. So the accident, my mountain-climbing accident, inspired me to design prostheses because when I was fitted with the limbs initially, I was not happy with their function.
CONAN: Can you describe them for us back in the day?
HERR: They were passive. They were unintelligent. In fact, they had no computational intelligence whatsoever, no sensors, no muscle-like motors. They were basically compliant sticks, if you will, designed for a flat world and designed for walking very, very slowly.
CONAN: And describe a prosthetic that you might be designing today.
HERR: Well, the prostheses that I'm wearing right now speaking to you are bionic. They emulate normative biological function. They have three computers, very small microprocessors and 12 sensors, and a muscle-tendon-like motor system. So even though my limbs are made of titanium and silicone and carbon, because we've captured the very nature of the biology, it moves as if it's made of flesh and bone.
CONAN: Amy Palmiero-Winters, we hear bionic, we think of the bionic man or the bionic woman. What does it feel like?
PALMIERO-WINTERS: I actually have the biome, and when you put it on, it actually gives you back what you've lost. It helps give you back what you lost. It's - you know, I have two little kids, and at the end of the night, they both want me to carry them upstairs at the same time, and so as odd as it sounds, it will actually help propel me up the stairs.
It will help replace the soleus and muscles in the back that'll actually help propel you forward. And I will admit, you know, prosthetics are amazing, but it did take me 10 years to get to this point. I don't want a listener to think that I did this yesterday and got to this point by today. It took a lot of hard work, and it comes from a lot of technology and creative eyes and fitting the socket.
So, you know, I've been to a lot of places, but it took me a long time to get to where I'm at and have the right fit and have the right components that allow me to do the things that I do. And it takes the creative minds of everybody around you.
CONAN: Let's get a caller in, this is Bob(ph), Bob with us from Des Moines.
BOB: Hi, how are you?
CONAN: Good, thanks.
BOB: I'm a two-year amputee. I lost my leg to a brown recluse spider bite. Now, I do have an above-the-knee amputation. I'm currently wearing a C-leg. I'm happy with it. I was wondering how your two guests deal with the phantom limb pain. That is the horrible thing that I have to deal with every day, and it doesn't seem like there's anything out - that they have anything other than narcotics to deal with this.
CONAN: And a C-leg, that's a type of prosthesis?
BOB: Yes, it's made by a company called Otto Bock, and I don't think it's state-of-the-art, but it is computerized, and I think C-leg stands for computerized leg.
CONAN: Dr. Herr?
HERR: Yes, well, thank you for calling in. I personally have a phantom awareness, but it's rare that it's painful. Other people, especially in traumatic injury, where the limb was, you know, had undergone trauma, and the nerve endings were ruptured, have a tremendous amount of phantom pain.
There are some techniques using mirrors to trick the mind that the body is in fact symmetric, when it's not. Long-term, there's some evidence that if you allow the nerves in the leg that have been transected or amputated to attach to muscle end organs that the phantom pain will in fact reduce tremendously. That's a...
CONAN: Bob, you were trying to get in there?
BOB: Well, how does one go about getting this accomplished, or what do you ask for? Because I've pretty much been told take your narcotics and go home.
PALMIERO-WINTERS: Well actually, I mean, if I'll interrupt, he is an above-the-knee amputee, so actually the C-leg is a computerized knee that he uses. He's not a below-the-knee. He's actually missing his knee joint and ankle joint. And so from my experience, I've always noticed that if the socket is a better, truer fit, your body has less space to change as in volume as in filling up with fluid and pushing on the nerves. It will actually help reduce phantom pain.
You're always going to have phantom feeling, but as far as phantom pain, and this is only my experience, and everybody has different experiences, the better and more proper and true the fitting socket, the less that it causes you phantom pain.
BOB: I've often wondered if it isn't a poorly fitting socket. But I guess I've been told my prosthetist that it's the best I can expect.
PALMIERO-WINTERS: When we become amputees, our circulation changes, and because of that it doesn't allow the blood to flow as properly without compression. When you don't have the compression on your limb, the true amount of compression, your limb fills with fluid. That fluid pushes on your nerves.
And again, I am not an expert. I'm just somebody who knows what everyday life is like. And I do know from experience that the truer the fitting socket, the less the fluid is around those nerves, and it's pushing on those nerves.
CONAN: Bob, good luck.
BOB: Thank you.
CONAN: Appreciate the call. Let's go next to - this is Trent(ph), Trent with us from North Liberty in Iowa.
TRENT: Hi, Neal, thank you for taking my call.
TRENT: My question is: I suffer from what is known as complex regional pain syndrome, same thing as your last caller, the doctors keep telling me that I will end up with phantom pain. But my question to them is: Why doesn't the insurance company or somebody say this is a better fit? Who - if I decided to amputate it, is it my responsibility to pay for that? Of course it would be, but why doesn't the insurance company want to help?
They would rather give me drugs and injections and things like that than give me what I would want.
CONAN: So when it's elective surgery, Amy Palmiero-Winters, is this paid for, covered by insurance?
PALMIERO-WINTERS: In my case, it was a medical necessity. It was improving the quality of life. And I cannot say that that's true for everybody. I was just in a situation where that was the next step in the process.
CONAN: Dr. Herr, I assume yours were also covered as a necessity.
HERR: Yes, I will echo what was stated earlier in the program, that many surgeons view amputation as a failure, and because of that mentality, there's this profound effort to salvage the biological limb, and that often results in many, many surgeries over a very long period of time.
But as we march into the future, and we see more and more advanced bionic limbs that are able to emulate biological function, I think people will opt earlier to amputate the limb, and that will actually save a lot of money for the insurance payer.
CONAN: Trent, good luck, thanks very much for the call.
TRENT: You're welcome.
CONAN: Let's get to Peg, Peg is on the line with us from Reno.
PEG: Hi, I've been a nurse for a long time, and in the late '70s, early '80s, I worked on an adolescent unit, where we had kids who had terrible usually motorcycle injuries. And we'd spend months and months and months trying to save their leg. And during that time, the kids would get multiple blood transfusions, which turned out to be a problem because of disease transmission. They'd get addicted to narcotics. They'd lose 40 percent of their bodyweight. It was awful. And eventually, they would amputate the leg anyway.
And then a couple of months later, the kid would be back on the unit to visit, walking on a prosthetic and saying, I wish I had done this the day after the accident. So I'm glad to see that, 30 years later, we're finally having that discussion long before we go - put people through all the trauma that they go through.
CONAN: Well, Hugh Herr, are you seeing a cultural change in...
PALMIERO-WINTERS: I will...
CONAN: Oh, go ahead, Amy. I'm sorry.
PALMIERO-WINTERS: I'll interrupt. Just because you are a nurse and - it's a huge team effort with the surgeons, and the nurses, and the prosthetists and the creators to all come together while that patient or the child is in the hospital and talk about the best possible surgical outcome. Technology is amazing, but you still have to put the prosthetic on every day.
So if - when the nurses and the surgeons all come together as a team and make the better, more healthier residual limb, if you have that situation and you can create a myodesis or you can create a bone bridge, that helps that patient wear that prosthetic every day in a better environment. So that, kind of, starts before all of this starts at the beginning. So it's nice to speak with the nurses who play a role - and such an important role - in that.
CONAN: And, Dr. Herr, how do you get the culture change to the point where physicians, and patients and indeed nurses start to consider these kinds of operations earlier in the process?
HERR: Yeah. I think courageous and extraordinary individuals such as Amy, such as Oscar Pistorius, also...
CONAN: The Olympic runner, yes.
HERR: Yeah. Also, you know, continued advances in technology. The word is going to get out. You know, typically what happens is a person's in a hospital bed, or they're at home, their limb has a pathology. It's nonfunctional or has poor functionality. Their quality of life is poorer than it should be. And they turn on the television, and they see an Amy Palmiero or an Oscar Pistorius running really fast, running very far. And they ask themselves, why am I lying here? Why am I suffering, month after month, year after year? So it's stories like that that will drive society forward.
CONAN: Peg, thanks very much for the call.
PEG: Thank you.
CONAN: We're talking about new choices for amputees. Our guests are Amy Palmiero-Winters, an elite ultramarathon runner, program director at A Step Ahead, a prosthetics clinic in Hicksville in Long Island; and Dr. Hugh Herr, who heads the Biomechatronics research group at the MIT Media Lab. You're listening to TALK OF THE NATION from NPR News.
Thomas(ph) is on the line with us from Kansas City.
THOMAS: I've been a BK amputee since birth. And my question is how would bionics be able to help those who have never experienced, for example, a foot or hand that they never had before?
CONAN: Hmm. Can you help us out? Amy Palmiero-Winters, I apologize. I understand you had to leave at 30 minutes after the hour, and I've kept you past your time. Do you have to leave us?
PALMIERO-WINTERS: We're good. I'm still good.
CONAN: All right. Well, thanks very much. Dr. Herr, I was wondering if you could comment on Thomas' question.
HERR: Yeah. So, again, you're born with a - with the limb amputated or shortened. Is that correct?
THOMAS: Mm-hmm. Yeah. So...
HERR: Yeah. There's a lot of well-known athletes. I mentioned Oscar Pistorius, the elite sprinter, and Aimee Mullins, another Paralympic athlete. Both of those individuals were born without fibular bones. At a very, very young age, their limbs were amputated. And they've - obviously, they've done very, very well with prosthetic devices. So, yes, prosthesis can often be employed in such situations.
PALMIERO-WINTERS: And I will add to that, because I do have friends and I do know people, as we all do, who have been born with congenital birth defects. And technology is definitely something that scares them. And some people do refuse it and go back to the old components that they had before, but technology is exciting, and it can do amazing things if you allow it to. So, if it's something that's possible and you're able to have and able to be a part of, then why not? You can always go back to what you had before.
CONAN: Thomas, thanks very much.
THOMAS: Thank you.
CONAN: And let's get one last caller in. This is Kevin(ph), Kevin calling from St. Louis.
KEVIN: Hi. Hi, Neal. Thanks for taking my call.
KEVIN: Hi, Amy. I'm a 50-year-old man with a left foot that's basically destroyed, living in pain for the last six years. I've discussed this with my wife, and she was just very set against it. I'm just not sure how to convince my family that, you know, the pain that I'm living with, day after day, and the narcotics and - is just not worth keeping this mangled-up foot.
PALMIERO-WINTERS: I know - you know, the one thing that my father had the worst time with was the fact that he couldn't help me, he couldn't fix me and he couldn't make me any better. So when I had my amputation, it was heartbreaking for him, and I think it was more so for my family seeing me go through what I had gone through. It's heartbreaking. Nobody wants to see their loved one lose their limb. And the best thing that I can say is to help educate them.
Prosthetics are more important and then more expensive than cars. So take your loved ones. Take them to prosthetics facilities. Visit four or five or six different facilities and have them see what it's all about, have them see what your life will be like. And then come together as a team and speak about it. And when you meet people who have had limb loss and you see where their lives are and maybe where they have been and the pain that they're in, and versus - I'm not going to say that it's pain-free. Wearing a prosthetic is not a pain-free life. It's the same as if you have a pair of glasses.
Sometimes your lenses break. Sometimes they fall out. Sometimes the nosepiece falls off. They are mechanical items. They will have malfunctions, and you will have breakdown at times. Your skin will bother you at times if, you know, you jump up and down like a yoyo and wait. That'll affect your fit. There are things that go along with wearing a prosthetic, but educating your family is very important.
CONAN: Kevin, thanks very much. I'm afraid we're going to have to end it there. But we appreciate it and good luck.
KEVIN: Thank you.
CONAN: And our thanks again to Hugh Herr, who is with us from the MIT where he's an associate professor of media arts and sciences and heads the Biomechatronics Research Group. Thank you very much.
HERR: Thank you.
CONAN: And our thanks to Amy Palmiero-Winters and again our apologies for keeping her late. It's the TALK OF THE NATION from NPR News.
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