Choosing amputation to gain a more active life
Share this article
NEW YORK, Feb 26 — One afternoon last summer, a team of prosthetic technicians hovered around Adam Taylor as if he were a race car in for a pit stop.
The length of Taylor’s new right leg was off, so a technician rushed away to shorten it at a pipe cutter. An additional fabric liner was added to Taylor’s residual limb. But it was too tight, so the additional liner was removed to allow better suction for the prosthesis. Another technician knelt on the floor, fiddling with the alignment of the new foot.
When Taylor’s leg was fitted and he had on a new pair of Nikes, Chris Kort, owner of Prosthetics in Motion, based in Manhattan, pointed him to a wheelchair for the 60-foot (18.2-metre) trip to a parallel bar walkway.
“Why can’t we walk there?” Taylor asked, with a mix of urgency and agitation.
At the end of the five-hour appointment, Taylor, 36, walked out of the office on two legs, joining the ranks of thousands of New Yorkers who use artificial limbs to help them get around in a city that prides itself on walking and more walking.
More than 4,000 amputations were recorded in the city during 2014, according to the most recent data from the New York State Health Department. Nationally, statistics indicate that more than half of all amputations are a result of vascular disease, often a complication of diabetes. About 45 per cent are a result of trauma and less than 2 per cent are, like Taylor’s, because of cancer. All in, about 2 million Americans live with amputations.
The sight of a high-tech carbon-fibre lower leg peeking out from a pair of shorts is increasingly common in New York. But what sets apart Taylor’s situation is that the operation to remove his right leg below the knee was elective. Taylor chose to amputate to gain a more active life.
For much of his life, Taylor struggled to walk. As a teenager, he had gaping wounds on his feet from a rare skin disease, linear scleroderma, constricting his right ankle with scar tissue. Several years ago, a wound appeared on his leg and never healed. Cancer developed. Last February doctors were confident surgery would remove the cancer, but when it did not, he was presented with two options: drastic reconstructive surgery or amputation.
“We went from 5 mph to 100 mph overnight,” he said, referring to the sudden need for a life-changing decision.
Even though amputation seemed extreme, Taylor, a product manager at Verizon, committed to exploring it and reconstructive surgery.
“How do you shower?” Taylor recalled wondering. “Do you have your prosthetic on all day? Do you sleep with it on? I really had no idea.”
A family friend heard about Taylor’s dilemma and put him in touch with Alec Evedon, a young man in Florida who had decided on amputation after a motorcycle crash left him with 40 per cent of the use of one foot.
“That mentality that I would rather die than get an amputation quickly changed,” Evedon, 22, said. He explained the nuances of his new life to Taylor: You shower using a chair; you wear your prosthesis all day; and no, you do not sleep with it on.
He also insisted that Taylor meet with a prosthetist, comparing the intimate, continuing relationship they might have to one with a hairstylist or tattoo artist. Taylor, whose left arm is covered with tattoos, understood.
Prosthetics in Motion appeared at the top of a Google search and what was planned as a quick visit turned into three hours. “We became part of his interview process,” said Michael Lichter, 34, a prosthetic technician with the company. Like Taylor, he collects sneakers, favours flat-brim ball caps and rides a bike. He is also a below-the-knee amputee, the instant result of a car crash. (“I had on a brand-new pair of Reebok Classics that I was really mad about,” he said.) He spent the following months swamped in depression. After three years in a wheelchair, he got a prosthesis and learned to walk again.
Taylor’s choice came during a time when thoughts about how prostheses are worn and what they should look like were shifting, Lichter said, and that helped to normalise amputation. While many people opt for prostheses meant to look like limbs, the bionic look is becoming more common, especially among military veterans. Even a recent shoe campaign from the designer Kenneth Cole features an uncovered prosthetic leg of a model front and centre.
Drastic reconstructive surgery, or limb salvage, was Taylor’s other option. Doctors offered differing opinions about how far into the muscle or bone the procedure should go. The only consensus was recovery time: six months of bed rest, provided the surgeon got all of the cancer and no infection developed.
“He has suffered so much for so long — 25 years — that we didn’t want any more huge surgeries that were maybes,” Taylor’s wife, Christa, said.
But Adam Taylor felt pressured to choose reconstruction. He said one doctor, who could perform both operations, refused to even discuss amputation. Others cast shadows over amputee life that did not align with the positive and agile amputees he had met.
Despite the fact that numerous studies show amputation and reconstruction result in similar function and life quality, amputation seems to be linked with failure, and some doctors have put their patients through hopeless operations to avoid it, said Dr. Daniel E. Prince, an orthopaedic oncologist at Memorial Sloan Kettering Cancer Centre who performed Taylor’s amputation.
“I think it comes from a little bit of the God complex in medicine,” he said. “We think we can fix anything.”
Taylor came to realise that he felt peaceful about amputation and uncertain about reconstruction. His constricted ankle, even before the cancer, meant walking 10 blocks was a challenge. Reconstruction might get the cancer, but it would not fix the walk.
“What am I trying to save?” he recalled asking himself. “Amputation is going to get me a new prosthetic that will have more range of motion than my actual ankle.”
In the end, Taylor knew what to do after an MRI revealed the cancer had spread, reducing the odds that reconstruction would be successful. With his decision made, the surgery could not come fast enough. Taylor, with a dose of morbid humour, took the first option available — a Friday the 13th in spring 2016.
The day of the operation arrived after a sleepless night, but Taylor said he felt a sense of celebration. For seven years he had spent two hours a day dressing his wounds. That morning he did not bother. As he left his apartment, he noted that he was walking down his last set of stairs on his two feet.
Now — nine months after the amputation and five months after his prosthetic fitting — Taylor is back on two feet. To measure his progress, he recalls what his right foot had permitted him to do, which was not much. When a friend came to visit New York two years ago, it was Taylor’s wife who walked around the city with him while Taylor stayed home. But when someone else came to visit a few weeks ago, Taylor walked more than 2 miles, four times the distance he had been limited to previously. Even Taylor’s physical therapist’s office, a few blocks from his Brooklyn apartment, is now a stroll away rather than a cab ride.
“Those things I don’t think about anymore,” he said. “I just put my leg on and walk and it is on until I go to bed. That’s it.”
Stairs to the subway are still a challenge. He describes each step down with his prosthetic leg as a slight free-fall rather than a controlled descent. But he waits for the rush of commuters to dissipate before he slowly makes his way down, relying on the handrail. At any rate, he said he was just glad to be taking the subway. The Taylors’ monthly Uber bill has fallen significantly.
While out with his three dogs recently after a snowstorm, Taylor walked with a noticeable limp but trod through old snow without a hitch. He had been practicing.
“It was a little wobbly,” he said, “but I got used to it.” — The New York Times