X-ray of implants holding Reynolds's knee together. Image: Will Reynolds

To Salvage or Sever: What Happens When Your Own Limb Is Almost Good Enough?

Doctors have gotten so good at salvaging limbs that patients are left with a tougher choice between amputation and keeping a leg that doesn't work well.

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Jul 16 2015, 1:30pm

X-ray of implants holding Reynolds's knee together. Image: Will Reynolds

While deployed in Iraq in November of 2004, Will Reynolds was hit by an IED. The shrapnel from the blast shattered the lower half of his left femur, and the whole middle third of his leg was pulverized. It was so mangled, that when he came to, the retired Army captain remembers looking down and seeing his left foot laying on his stomach.

Reynolds was medevaced to Baghdad. He still had all the soft tissue in his leg, but his bones were shattered and he had severed two arteries. After three days of surgery in Baghdad the doctors had restored blood flow, harvesting veins from his right leg to patch up the two sliced arteries, and putting what was left of his leg back into place. In Baghdad doctors externally fixed his leg in place with a large outer framework, and then sent him to Germany where a new set of doctors got his infections from the injury and surgery under control before sending him back to the United States. A week after his injury, Reynolds was at Walter Reed hospital in Washington DC.

Between December 2004 and May of 2005, Reynolds had two to four surgeries every month to try and save his leg, slowly installing bits to restructure it, repairing sections, strengthening and rebuilding bones. Every time he went in for another, his surgeons told him, "Here's what we're going to try to do, but if things go badly we might have to amputate." Every time he came out with his leg still attached.

By 2005, after more surgeries, an infection, and some last-minute hardware installations, Reynolds had a leg he could bear weight on. He went from crutches, to a full leg brace, to a shorter brace, to a cane. And because of the nerve damage from the injury, he says he actually wasn't in all that much pain. But he still had some issues. He couldn't bend his left knee more than 10 degrees, which meant he couldn't sit comfortably or go up and down stairs easily. And after the reconstruction, his left leg was a bit shorter than his right. Reynolds says he couldn't walk long distances even with a cane.

For years after the blast, every time he went in for surgery, he mentally prepared for amputation. But Reynolds always gunned for saving his leg. "I'm a pretty optimistic person, I think doctors are too," he said. "So I was like 'yeah we can do this!' I was completely on board with what they were selling to me. I thought I was going to be that person who got their leg completely mangled and then went through all these treatments and would be back to like, I don't know [about] running, but I thought maybe enough range of motion to ride a bike. Sit comfortably with my organic leg. I was on board with reaching a high level of function."

And even though he couldn't sit comfortably, or bend his knee, Reynolds got along. "I was learning how to do all the activities I do normally with one leg," he said. He started biking with a specialized bike, so he could ride using just one leg. He learned how to hold his leg up while skiing with outriggers in his hands. About half the time he could walk without a cane. He broke into competitive para-cycling, racing using just one leg. His leg wasn't the same as it was, but it was saved.

Another x-ray from early in Reynolds's limb salvage operations.

Reynolds is a pretty classic example of the leaps and bounds that a strategy called "limb salvage" has come. Limb salvage involves a whole lot of things, but it means essentially what it sounds like—saving a damaged limb by reconstructing it. While the media might focus on prosthetics, the technology and techniques involved in limb salvage have advanced tremendously too, spurred in large part by America's recent military conflicts. "We've learned a lot about how to salvage limbs, so we can do fairly complex reconstructions and be successful," said Roman Hayda, MD, a surgeon and retired Army colonel who worked on a 2013 study comparing outcomes between limb salvage and amputation, and who has done his share of both.

Now, when a soldier or civilian faces a brutal limb injury, they have choices—save the limb, or amputate. Be a limb salvage patient, or an amputee. Reconstruct the limb you were born with, out of the pieces you have left over, or lose that limb altogether. And that choice is, increasingly, a really difficult one. And Reynolds has had to make it twice.

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There have now been several studies that compare the results of limb salvage and amputation. Most of these studies are done on soldiers, rather than laypeople, which comes with its own set of caveats. Soldiers tend to be in better shape than your average person, they tend to be better educated, and have a built-in support system in the military. They also have access to military health care—at least initially—and in many cases are assigned a military hospital on the base where they live, which can alleviate worries about getting to rehab or paying for it. "You could focus them on their recovery much better than in the civilian sector," said Hayda, "where you have your mortgage to pay, your transportation to therapy. Your insurance company says you have 10 therapy sessions and that's it, you get one prosthetic limb and that's it."

But these studies, along with ones looking at car accidents and bone cancer patients, are what we have. So caveats aside, here's what doctors know about the differences in outcomes for limb salvage and amputation. Patients who undergo amputation tend to get through rehab more quickly, and have fewer surgeries. In some studies, patients who undergo limb salvage report a higher quality of life. In others, the results are the opposite. In one review paper, which looked at nine different observational studies comparing limb salvage and amputation found that there was no clear difference in outcomes between the two. One study found that if a patient and doctor agree on amputation, the sooner the amputation is done the better the outcome will be. If the amputation is done within 90 days of the injury, the patient is less likely to have prolonged infections, PTSD, substance abuse problems or mood disorders.

"In some people, the pendulum has swung so far that they're thinking, 'Well, if I have an amputation it's going to solve all my problems'"

It's hard to make sweeping statements about which is a better choice, limb salvage or amputation, because so much of this depends on the severity of the injury. Above knee amputees have a harder time learning to use their prosthetic than below knee amputees, for example, as do those who suffer upper body injuries. Losing a hand tends to be far more life-changing than losing a foot. Because they try to lump a lot of things together, many of these results also solidify what might seem obvious. In the words of one study: "Participants with more functional lower limbs had better quality of life than did those with less functional lower limbs regardless of whether they underwent amputation or limb-salvage surgery."

In the last 15 years, prosthetics technology has advanced steadily. Hayda says that these days, perhaps because of just how much coverage new prosthetics get, people are sometimes too quick to jump for the amputation. "In some people, the pendulum has swung so far that they're thinking, 'well if I have an amputation it's going to solve all problems, my nerve isn't working in my leg, I'll have an amputation and it will be solved by the prosthetic limb,'" he said.

But, perhaps more silently, just as prosthetics have advanced, the technology available to surgeons to rebuild and save limbs has advanced too. There are better implants to stabilize the bone, there's better wound care to salvage soft tissue, and better techniques to transfer tissue from different parts of the body. Doctors can now graft veins from one area onto another, like they did for Reynolds, and get blood moving again in areas that before they'd have to let go. In some cases, doctors have even been able to transplant whole arms.

All of this is mostly to say that the choice between limb salvage and amputation is rarely a clear one. "The question is what's best for any given individual," said Hayda. "Some people when faced with that option will say amputate, and others will say save it at all costs." Hayda stresses that the decision is different for each person. He tries to involve the patient's family, bring in prosthetists to talk about the devices they might get, and walk them through the timelines for reconstruction.

"It's a hard decision," Hayda continued. "Some folks are very categorical, this has to be salvaged or [amputated]. I don't think it's necessarily that clear, given our state of technology and surgical techniques."

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Despite being valuable, many of these studies don't account for the entirety of a person's life. And there are things they don't capture. Take for instance, the support system a soldier or citizen might have coming out of surgery. These days, the amputee community both in and out of the military is strong. There are Facebook groups and meetups and robust fraternities of folks missing limbs. People see an amputee and they recognize the disability, they understand what it is. That's not the case for limb salvage. People who still have their leg, even if it's in bad shape, even if it doesn't work that well, or causes them pain, or is held together, tenuously, by dozens of bits of metal, don't engender the same kind of community.

Reynolds says that he had a handicap placard for his car, which he rarely used. But at concerts, or events where the parking lots were huge, he would use the card to avoid the long walk from the parking lot. "And I got scrutinized many times," he said. "They would look at me, a young fit guy and be like 'there's no way,' and I would be discriminated against because of that."

And it's not just the regularly abled who push against folks who've had limb salvage either. Many whose legs have been saved can walk, but cannot run. As a result some turn to wheelchair sports to try and stay fit. Reynolds says that he has friends who have gotten into wheelchair endurance events, and who have been called out by folks who can't walk at all. "They'll say, 'You're not paralyzed, why are you out here in a push room doing wheelchair endurance events,'" Reynolds said. "They're caught in this middle ground where they don't have that community."

This is more true today than ever before. From Dancing with the Stars to local crossfit gyms, amputees are becoming more common neighbors and media figures, which gives soldiers and laypeople a target, a visual goal for what is possible, a path to follow. That wasn't always the case. Reynolds says that when he first got hurt, in 2004, there weren't nearly as many role models for what a fully recovered amputee could do. "You really didn't know what the end would be," Reynolds said.

Walter Reed's prosthetics research has changed the amputation versus limb salvage equation.

Now, at the Military Advanced Treatment Center at Walter Reed, where many soldiers rehab, you can see veterans in each stage of the process—from people who have just had surgery, who have just been fitted with their prosthetic to those who are taking their first steps, to those who have been on prosthetics for years and are coming in for a new fitting. "Now you see the full spectrum, before your eyes you can see the progression you'd have," Reynolds said.

There's still a lot doctors don't know about the outcomes, too, particularly for the limb salvage patients. It's clear that the recovery process for limb salvage patients is longer, and the path is less clear. It can take 10 surgeries or 30. It's also likely that those surgeries continue throughout your life. In 2010 a piece of hardware inside Reynolds leg started to protrude, threatening to break through the skin, so he went back into surgery again to have it removed. But what happens to these patients 10, 20, and 30 years down the line isn't well documented.

"We're trying to address those questions on quality of life, to follow them in the long term," Ted Melcer, a researcher at the Naval Health Research Center, told me. Mecler and his team worked on a study that tracked veterans who went through amputation and limb salvage using a database of military personnel medical records. "Those questions, by themselves, that's many years worth of work. And many years from now the main question is how do we follow these patients in the long term."

* * *

Reynold's story has a bit of a twist ending. In 2013, he was hit on his bike and went down, breaking another area of his tibia. He was facing three months of recovery, after even more surgeries. And when he thought about it, about how he couldn't sit comfortably, go up stairs, or walk without a cane for long distances, he decided it was time.

When they told him they were going to go back in, and put even more hardware into his leg, he thought, "Rather than having more surgery I might as well just go back to what had been presented to me, and go ahead and have the amputation," he told me. It was over the holidays, and with his family around him Reynolds went for the surgery, where doctors removed his leg just above the knee.

Reynolds riding with a cycling prosthetic at the 2014 Tour of Hamptons. Image: Will Reynolds

Now, Reynolds is an amputee. When I asked Reynolds what advice he would give someone trying to decide between an amputation or a limb salvage, he said it was important to think of your whole life, not just the one thing you want to do. "If you're looking at just one aspect, and thinking, 'Oh I can't run, I need an amputation,' think about it. Will gaining that one activity provide you enough satisfaction for that amputation to be worthwhile?" he said. For him, he says it was. But it's not for everyone. "I urge everyone to kind of look at the whole spectrum."

Reynolds says he thinks the amputation was the right choice for him. He's no longer going to have to worry about how his salvaged leg might age, and what surgeries he might need in the future to keep it held together. "Really the only two things that changed are I have to put a leg on, or use crutches, or hop in the middle of the night to the bathroom, and I have to shower on one leg," he said. "That's it."

The first time I met Reynolds was at the bottom of the mountain in Breckenridge, Colorado, where he was skiing on his prosthetic knee far faster than I was snowboarding on my biological ones. When I spoke with him last week, he had just gotten back from the UCI Para-cycling Road World Championships in Switzerland. It's his first year back at the World Championships, after his surgery, and he was happy to finish in the middle of the pack for his four races. In many ways, he has become the example patient he thought he might be, going from mangled leg to bike racing again. The path just wasn't quite as straight as he might have predicted.

Modern Medicine is a series on Motherboard about how health care and medical technology can move forward so rapidly while still being stuck in the past. Follow along here.