The decision to amputate a limb is not one taken lightly, by patients or their physicians. In certain cases, however, when all steps have been taken to save an extremity without restoring function or relieving pain, the patient, surgeon, and prosthetist and other rehabilitation team members must work together to ensure both function and pain relief for the new amputee.
At age 11, Dale Jackaman developed a cancerous tumor in his left ankle. He had surgery and radiation in the area surrounding his ankle, as well as removal of his lymph nodes and radiation in his upper leg. The cure was worse than the disease, he said, but he survived.
He completed three tours of military duty in the Middle East with the Canadian Armed Forces Reserve, Signal Corps, and managed to avoid injury in the irradiated area.
It was not until years later, as Jackaman approached his mid-30s, that he began experiencing pain in his left leg, that extended down to his foot, after jogging several laps around the track. He visited his physician, where a compartment test revealed poor circulation in his foot. Given that this was an irradiated area, Jackaman was ineligible for any kind of surgery because of the risk of the site not healing properly.
“But it got progressively worse. It got to the point where I could walk a block, and at the end of the block, I would be in a fairly high degree of pain,” he said.
Doctors told him there was nothing they could do to alleviate his pain.
Chris Ridgway had a slightly different experience. As a professional racer, he was accustomed to high-risk activities. A dirt bike crash in 1995, however, catapulted him into a world of pain that he had never felt. The accident crushed both of his ankles and heels, and broke both of his legs, and he spent the next couple of years in a wheelchair before he began racing again.
In the meantime, his doctors fused both ankles and performed many surgeries to try to repair his left side, which was worse than his right.
He continued racing, and relied heavily on painkillers, which did not ease the pain.
“I felt like no one was taking me seriously that I was in that much pain,” he said. “The doctors were saying that I just needed to change my lifestyle, that I needed to basically sit on the couch … and that wasn’t what I was about.”
Lack of function
Ten-year-old Nick Nelson, on the other hand, has a rare autosomal dominant condition called popliteal pterygium syndrome. Children born with this disorder — 1 in 300,000 — may have multiple anomalies, including a cleft lip and palate, according to the U.S. National Library of Medicine’s Genetics Home Reference.
When Nick was born, his mother, Greta Nelson, found that he had the disorder’s hallmark webbing behind the back of his knee joints, that prevented him from straightening or bending his legs more than a few degrees. In addition, Greta said that Nick had developed in utero knee contractures due to the tight tissue bands within the webbing, causing a fixed position of his legs during development.
Throughout the first 8 years of Nick’s life, he and his family worked with Gillette Children’s Specialty Healthcare in St. Paul, Minn. to try to correct these issues through approximately 30 surgeries, physical therapy and orthotic devices.
“Nothing ever really worked for him,” Jen Klein, CPO, at Gillette, said. “It was difficult for him to ambulate at all, and when he could, it was just short distances.”
The Nelsons, however, wanted their son to reach further than that.
At some point, patients in situations of intense, chronic pain or limited function begin to consider their options. After attempting or ruling out all other options, many people find themselves facing a difficult choice: life as it is, or some degree of amputation.
J. Tracy Watson, MD, chief of the orthopedic trauma service and professor of orthopedic surgery at Saint Louis University School of Medicine in St. Louis, Mo., weighs the options.
“We get a lot of mangled extremities,” Watson said. “You have this extremity that is in question and you have to decide whether it is salvageable, even in the best of circumstances.”
He decides, first, whether limb reconstruction surgery would be successful. Watson looks at the extent of the soft tissue injury as an indicator of whether the limb will survive. A multi-center study of severe lower extremity trauma patients in the United States, called the Lower Extremity Assessment Project (LEAP), showed that soft tissue injury severity has the greatest impact on the decision to salvage the limb or amputate, he said.
“If we save this leg, are the toes going to work? Is it going to be sensate? Is it going to be a functioning limb? It comes down to what the soft tissues are like,” he said.
Klein and the team from Gillette met with the Nelsons approximately one month prior to Nick’s initial amputation. They discussed what they should expect from Nick’s recovery and prosthetic care.
“They really did their research, even before I met with them. They talked to a lot of different physicians,” Klein said. “Their goal is just to improve his quality of life.”
Klein understood how difficult it was for the Nelsons to decide on such an irrevocable option.
“I think it is probably one of the hardest decisions to make, to amputate or to not amputate,” she said.
Decision to amputate
Most of the patients that Watson sees are trauma cases and many of them fight to save their limbs.
He also has a trauma referral elective practice, where he treats patients about a year after their injuries, often after nine or 10 surgeries. The wound is often infected, the bone is not healed properly and their limbs only “kind of work,” he said. “It takes a toll.”
He sits down with these patients to explain their options.
“I have had good success with limb salvage,” he said. “But if there is no hope, I’m up front regarding amputation. A lot of times they say, ‘Thank you. I was waiting for someone to say that. Let’s just get on with it.’”
Jackaman said he had been expecting to have his leg amputated for at least 10 years.
Through research and visits to a prosthetist at the GF Strong Rehabilitation Centre in Vancouver, British Columbia, he readied himself for the pain, prosthetic training and months of rehabilitation following his left transtibial amputation.
“I decided deliberately to get it done early while I was healthy, before I had any major infection problems or anything of that nature,” he said.
Ridgway, too, was waiting for the right opportunity to rid himself of his painful extremity. It took him 2 years to find a surgeon who would agree to amputate his leg, which angered him.
“I saw people who were getting along better with prostheses than I was with my original equipment,” he said. “It got to the point where I was going to do it myself just to get it done.”
Eventually, racing motorcycles caught up to him and he was injured again, this time breaking his right femur and hip. He convinced doctors to repair that injury and amputate his other leg a short time later and, in December 2002, he underwent a left transtibial amputation.
For Nick, looking to another young man in a similar situation provided the answer he needed. He befriended Rudy Garcia-Tolson, who also had popliteal pterygium syndrome, and was inspired by his story of amputation and subsequent Paralympic success. After only a few unsuccessful surgical procedures, Nick decided that the amputation of both of his legs was the answer.
“No one else was quite ready to give up,” Greta said. “So we continued with painful surgeries to help straighten his legs, but ended up with minimal to no lasting results.”
By the time Nick was 8 years old, he told his parents and medical team that it was time.
“He was done with surgery and done with being in pain,” Greta said. “His thought was, ‘My legs don’t work, so give me something that does.’”
The amputation of Nick’s right leg went smoothly, and he made a quick recovery. His other leg, however, held him back, and so, one year later, surgeons amputated his left leg through his knee.
This second recovery presented several issues for Nick, including a 5-week hospital stay for additional surgery and extensive antibiotic treatments. He also developed a large neuroma that required surgery in March and again is being refitted for sockets.
Ridgway’s recovery time was abbreviated, he joked, because being a professional motorcycle racer had made him accustomed to going through the process. Within a week of leaving the hospital, he drove his rock buggy — with a crutch on the clutch — during a camping trip. Three months after his amputation, he completely stopped taking the painkillers he had needed for the past 8 years. Five months after surgery he was walking better than he had since 1995.
Ridgway has since had revision surgery to correct bothersome nerves, but he said his condition continues to improve as time goes on. He was able to return to racing and now competes in Motocross events, and won a gold medal in last year’s X Games.
Jackaman said he sailed through his rehabilitation program by remaining patient.
“Maybe it’s my military background where I follow orders,” he said. “I did exactly what I was told to do … and the program worked for me.”
Thanks to his hard work and his team at GF Strong, he was able to run down the hall at full speed 2 months after amputation. Now, 6 years after his amputation, Jackaman leads a “normal,” active life.
“It is just like putting on my shoes, except there is a prosthesis attached to it,” he said.
He works out regularly at the gym, and enjoys walking for miles without any pain. As an amateur radio operator, he also climbs the six- and nine- story radio antenna towers on his family property much of which he installed after the amputation. In addition, he relays his experiences to other patients at GF Strong as a peer counselor.
“I’m actually a heck of a lot better off with a prosthesis than I was before,” he said.
For these patients, amputation proved to be the best option, but Watson discourages anyone from deeming this the perfect answer.
“There are no hard-and-fast rules,” he said.
In fact, he said the LEAP data demonstrates that the patient satisfaction rating at 2 years postoperative is basically the same whether patients have had limb salvage surgery or an amputation.
“The patient satisfaction is predicted more by the overall function, pain and the presence of depression than by any underlying characteristic of the patient injury or even the treatment,” he said. “It has a lot to do with the patient’s psyche and their perception of how well they are functioning, and whether they have pain or not.”
Jackaman wants others in similar situations, who face lives filled with pain, to know that losing a limb is not a dead end, but a new opportunity to help them get their lives back.
“Amputation is so good now that you see people walking … who you would never know had an amputation,” he said.
Ridgway does not rule out amputation of his sound leg if the pain escalates to the level it had been with his left leg, although he admits that it would be a bigger decision than with his first.
For now, he wants to continue racing, and hopes to become a counselor for others with chronic pain. He said patients should be sure to choose a medical team that considers amputation as a viable option, and takes full advantage of the surgery to ensure the best possible prosthetic outcomes.
“I wasted a lot of years sitting around, not being able to perform at my full ability because I had this boat anchor,” he said.
Now that Nick is on his way to “legs that work,” Greta said that his list of goals is extensive, starting with becoming a Paralympic athlete, among other options.
“A surgeon or a lawyer or maybe president, if he has the time,” she said. “His future is wide open. But more than anything, he wants to play with his friends and do the things that 10 year olds do every day … run, jump, kick … and do them without pain.”
Amputation has afforded him that luxury.
For more information:
Stephanie Z. Pavlou, ELS, is a staff writer for O&P Business News.