Amputees often suffer from this vexing disorder

Melissa Haneline

Jane Hecht, a Summerville resident who had her right leg amputated in 2000 after a car accident, suffers from phantom limb pain. Here, she describes the sensations that haunt her each day, most of which mirror the pain from the surgeries she had to try to save her leg after the accident.

Jane Hecht has been living with the pain in her right leg for almost 10 years. It feels, she says, as if her leg is being "electrocuted," and the hole in the bottom of her foot where a skin graft didn't take after a 1998 car accident throbs constantly.

The most maddening part of it all, though, is that Hecht's leg is gone. It was amputated in 2000 following a series of surgeries that cobbled her pulverized leg back together with plates, pins and screws. None of it worked, though, and her wounds never healed properly. Finally, Hecht said just take it off.

But still, the pain remained. Hecht, 55, suffers from phantom limb pain, a vexing affliction common among patients who've lost legs or arms, most often those whose amputations stemmed from trauma, such as war wounds and car or motorcycle wrecks. The phenomenon isn't well understood by doctors, and it can be tough to treat.

One theory about the root of the problem involves the idea that some of the nerves that help suppress pain are lost during amputations, while other experts believe the brain is responsible, perhaps because it holds on to painful sensory memories associated with the trauma that led to the amputation.

The emotional and psychological adjustment involved in losing a limb may contribute to phantom pain, says Dr. Arthur Smith, director of the Medical University of South Carolina's chronic pain management clinic.

"There's a drastic change in the perception of your body image that you're not prepared to accept," he says.

About 5 in 1,000 Americans are living with limb loss, according to the Amputee Coalition of America, but there are no official estimates on how many of them experience phantom pain. Veterans hospitals expect a flood of amputees seeking after-care in coming years since U.S. military service members have lost limbs during the ongoing wars in Afghanistan and Iraq at twice the rate of those in previous conflicts, according to the U.S. Department of Defense. And people with diabetes — a growing problem in South Carolina, where at least 270,000 people have the disease — are 25 times more likely to need an amputation than those in the general population.

In some ways, amputees with phantom pain share traits with the millions of other Americans who suffer from chronic pain because of cancer, headaches, back problems or arthritis. They, too, sometimes struggle to find relief, and the pain may impact their ability to work, move around or even do basic things such as dress and bathe themselves. But what makes phantom limb pain so unusual is that the apparent source of the pain isn't real: Sufferers who try to massage their achy, pulsating limb will grab only a handful of air.

Ordinarily, kneading a painful spot can help stimulate nerves to send messages to the spinal cord to suppress the ouch, says Dr. William Tyor, chief of neurology at the Ralph H. Johnson Veterans Administration Medical Center in Charleston. Amputees don't get that built-in relief option.

"You're reaching down to nothing — it's gone," said Summerville resident Dana McInerney, 52, who had a leg amputated a year ago after a long battle with diabetic foot wounds. "Your brain is telling you that it hurts, but physically, it's not there."

She often feels like she's stepping on nails, and when she lies still at night, there's a twitching sensation in her missing limb. She knows it isn't really there, but still she searches around for a way to prop up that phantom leg and relieve the pain.

Many amputees say they "sense" the presence of their missing limbs, but pain is less common, and sensations vary among sufferers. Tyor recalls patients who've described burning, electrical shock, stabbing or knifelike pain or just plain old aching. Sometimes it comes and goes throughout the day, maybe getting worse at night. Other patients say the pain is constant.

Hecht has tried a long list of remedies. First, there were pain pills and nasal sprays. She was prescribed the narcotic methadone at one point, but after taking a single dose decided she'd rather cope with the pain than "go around feeling that way." She also turned to a pulsating radio frequency device on her stump, acupuncture treatments and even an implantable electric stimulator in her back. None helped, she says.

Since 2002, she has been getting epidural injections in her spine every few months, and says that works better than anything else she has tried. McInerney uses a drug-infused patch on her stump for 12 hours each night, that she says brings her pain down to a 6 on a scale of 1 to 10, with 10 being the most severe.

Jerry Underwood, a 65-year-old Conway resident who lost a leg in a 1962 car accident shortly after he left the Army, says that after trying multiple medications, he has no choice but to just try to cope with the sensation.

"Ain't nothing that'll help it," he says.

"I've tried everything in the world. You just have to let it go its course. "

Doctors, however, say cases that severe are rare. Most phantom pain sufferers tend to feel better with time, or respond to treatment with drugs such as those used to treat neuropathic pain or epileptic seizures, Tyor says. Narcotic pain relievers such as morphine tend not to help phantom pain much, he says, but some patients get relief from pain-relief injections, implantable nerve-stimulation devices or biofeedback.

Anti-depressants sometimes can help, too, especially when patients also are dealing with post-traumatic stress disorder or depression.

But it's not just the pain that's a burden, patients say. They also struggle to explain the phenomenon to family, friends and acquaintances. How, people ask, can your leg hurt when you don't even have one?

"It's hard for them to understand. People look at you and say, 'Yeah, OK,' and then they walk away," McInerney says. "It's best to say you're just not feeling well."

Reach Holly Auer at 937-5560 or hauer@postandcourier.com.