It was the scariest thing Kathy Yokum ever did.

In May 2003, when doctors scheduled her for surgery to amputate the big toe on her right foot, Yokum called Massachusetts General Hospital to cancel.

“Excuse me!” the nurse protested. “People don’t just cancel surgery. The surgeon is very busy and won’t be able to schedule you again until August.”

“That’s okay,” said Yokum. And she hung up.

‘I Didn’t Know Exactly Why They Were Taking My Toe’

At age 52, Yokum had had type 1 diabetes for 22 years and suffered from peripheral neuropathy. She had been seeing her doctor for a broken ankle, after she fell from a porch. When the cast was removed, a piece of bone on her right big toe protruded through the skin, creating a stubborn lesion that measured almost an inch across.

The lesion failed to heal, and Yokum was subsequently diagnosed with osteomyelitis—an infection of the bone.

Because she was well aware that a spreading infection could endanger her life, refusing a procedure recommended by experts at a prestigious hospital seemed like an outrageous step.

On the other hand, she felt driven by powerful intuition and common sense.

“I didn’t know exactly why they were taking my toe,” she explains. “It just didn’t seem like they had conclusive evidence.”

Yokum surfed the Internet to find a specialist in bone infections. Additional tests and exams showed that although she may have had Charcot’s foot—a loss of structural integrity of the bone related to neuropathy—she did not have osteomyelitis.

Yokum carefully carried out her new doctor’s orders for wound care and follow-up. She also began using monochromatic infrared light therapy (MIRE), a new treatment developed by Anodyne Therapy, LLC of Tampa, Florida. This therapy has been cleared by the U.S. Food and Drug Administration to increase circulation.

“It was almost miraculous the way the wound began to heal,” she recalls. “It gave me hope.”

By mid-July 2003, approximately six weeks after she had been scheduled for amputation surgery, the wound closed completely, and her foot was no longer in danger.

“No harm was done to me by waiting to amputate,” Yokum asserts. “One set of doctors said I absolutely should lose my toe—period. When people with diabetes get osteomyelitis, doctors give up really easily.”

Her situation illustrates the importance of never letting someone perform a procedure unless you clearly understand the rationale and how you will benefit.

“A good surgeon should always explain exactly what is being done,” says Ron Olsen, DPM at Advanced Foot and Ankle Ltd. in Kingman, Arizona.

Are Some Doctors Too Quick to Cut?

Although Yokum saved her toe, situations in which surgeons are quick to amputate without carefully considering all available options or offering referrals to specialists are alarmingly commonplace.

Doctors told Carl Butler, a type 2 for 24 years and a resident of Guam, that his left foot would need to be amputated when a callus developed into an ulcer and resulted in osteomyelitis six years ago.

“No,” said Carl’s wife, Winnie. “Let’s go to the States.”

Butler and his wife went to Seton Medical Wound Care in Daly City, California. Although curretage—scraping of the bone—left Carl’s foot a bit shorter and in need of a special shoe, the foot was saved with six weeks of aggressive treatment.

“Instead of trying to save the foot, [my doctors in Guam had decided to] solve the problem by just cutting it off,” Butler contends.

Doctors Slow to Embrace New Treatments

In rare cases where infection spreads rapidly, amputation is a life-saving procedure. The vast majority of patients who endure amputation are already debilitated from systemic heart, vascular and kidney disease; and for these people, amputation is merely one sign of bigger, more disastrous health problems.

In other cases, however, amputations are clearly the result of inadequate health care systems, where access to care is limited. In such situations, doctors may rely on amputation as a standard means of preventing further infection.

And, as is common in the diabetes world, traditionally conservative doctors remain slow to embrace new treatments and are often unwilling to refer patients to specialists.

A comprehensive review of literature concerning diabetic ulcers, wound care and amputation was published in the May 2003 issue of The Lancet. The two authors of the review, William J. Jeffcoate, MRCP, one of the journal’s contributing editors, and Prof. K.G. Harding, FRCS, reached important conclusions.

“Diabetic foot ulcers have been neglected in health care research and planning, and clinical practice is based more on opinion than scientific fact,” they wrote. “Furthermore, the pathological processes are poorly understood and poorly taught, and communication between the many specialties involved is disjointed and insensitive to the needs of patients.”

The Lancet study also cited differing medical opinions on best practice and—especially curious—regional variations in amputation rates.

“The cause for this [variation] cannot be determined precisely, but possibly reflects a regional approach by local surgeons,” the study reported.

Paul Sally, 70, has had diabetes for 55 years. His left leg was amputated below the knee at the University of Chicago in 1995. Sally is grateful for the university’s intense rehabilitative treatment. He uses a prosthesis and enjoys an active lifestyle of work and travel. However, he characterizes the events that followed his diagnosis with a foot infection as a series of unorganized medical procedures and encounters with “hack podiatrists.”

Following surgery for a skin graft, Sally was discharged from the hospital without antibiotics, even though his labs revealed the presence of an especially virulent strain of bacteria. A week later, his foot bright red, the quick amputation may have saved his life.

“You gotta watch these people,”Sally nevertheless speculates. “Quite often, I think, they do [amputation] because it’s cheaper than long-term treatment.”

Reducing Amputation Rates

Mountaineers who lose limbs to frostbite are treated like celebrities. People with diabetes who survive and even thrive after amputation should be considered heroic as well.

However, when amputation can be avoided, it pays to investigate all the options.

Dennis Ehrmann has diabetes with severe neuropathy. He lost his little toe to an ulcer and has another ulcer on his big toe. Ehrmann regrets that he wasn’t more proactive in taking care of his health.

“Get serious about diabetes,” Ehrmann says. “Do it today.”

Carl Butler advises people to always try to save their limbs, no matter what.

“If somebody says, ‘We’re going to cut it off,’ get a second or third opinion. If you live where facilities are limited, then go to a big city.”

With any wound to the extremities, the patient must bear the responsibility of getting to a doctor quickly and then seeking additional opinions if needed.

And, of course, if you want to have healthy circulation, it’s important to stop smoking, exercise, control your blood glucose as best you can, and keep cholesterol levels down.

Overcoming Fear With Facts

Let’s face it. Even if we follow all the rules we’ve heard about endlessly—everything from avoiding walking barefoot to having someone else trim our toenails—living life means that we’re likely to have mishaps that result in foot injuries.

We can, however, feel confident that immediate treatment, informed follow-up and consultations with specialists, if necessary, ensure that we’ll live long and well with all our limbs intact.

No need to imagine the worst- take action. See a doctor immediately if you have a foot problem.

Grim Facts:

The American Diabetes Association estimates that 80,000 people with diabetes will lose a leg or a foot every year. Mortality rates following amputation run as high as 50 percent at three years, although death seems to occur from conditions not identified as directly related to the amputation, such as heart disease or kidney failure.

Preventive Treatment

Diabetic ulcers can fail to heal or be slow to heal because of an inadequate supply of blood and oxygen to the tissue. The result can be infection in soft tissue, called cellulitis, or in bone, called osteomyelitis.

The lines of defense are simple. First come antibiotics to control the infection. Next, a doctor might focus on reducing calluses that can irritate ulcers and on debridement, the cutting away of dead tissue. If bone infection is present, cutterage-the scraping or shaving of bone, might follow.

Conditions That Lead to Foot Ulcers

Only about 15 percent of all people with diabetes will develop foot ulcers. The underlying causes of such ulcers fall into two main categories:

• Peripheral vascular disease (PVD)

  This is a disease of the blood vessels, characterized by narrowing and hardening of the arteries that supply the legs and feet. It results in decreased blood flow and ischemia, a lack of oxygen in the tissues

• Diabetic peripheral neuropathy (DPN)

  This condition occurs when abnormal glucose metabolism or inadequate blood supply damages nerves, resulting in a decreased ability to sense pressure or injury