A life of pain: Woman chooses amputation to deal with painful disorder

A life of pain: Woman chooses amputation to deal with painful disorder »Play Video
Libby Schaffer decided to have her leg amputated after years of ineffective treatments couldn't dull the excruciating pain she feels.

PORTLAND, Ore. – Like so many other children, Libby Schaffer had a bad experience on the playground. When she was six years old, Schaffer broke her heel after being pushed from a set of monkey bars.

As you might expect, the injury caused her quite a bit of pain. What you might not expect, however, is that at age 31 Schaffer is still feeling excruciating pain in her leg from that childhood injury.

We’re not just talking about a dull pain every now and then; we’re talking about sensitivity so extreme that even a stiff breeze from an open door can cause her to scream.

“It has taken a lot of years to not cry every time I have to move around or get into a car,” Schaffer said.

When she was 12, doctors diagnosed Schaffer with a condition called Complex Regional Pain Syndrome. It’s a nerve disorder caused by trauma where the peripheral and central nervous system don’t properly communicate.

In Shaffer's case, she feels the extreme pain in the leg where she broke her heel.

“Nerves are really a misunderstood part of the body,” Schaffer explained. “There’s no shut-off. The nerves are misfiring and sending the wrong message to the brain and the brain can’t turn it off.”

Twenty-five years after her original injury, Schaffer was forced to make an agonizing decision. After years of ineffective drugs, therapies and procedures, she decided the only remaining option was to have doctors amputate her leg.

“I’ve had a lot of people look at me like ‘you’re insane! How could you want to have your leg taken?’ Schaffer said. “I say ‘how could I want to live like this for the rest of my life?’ Because at this point the only thing left for me to do is go home and live on pills. And that’s not a life.”

Schaffer is meeting soon with an orthopedic surgeon and hopes to have the surgery scheduled within the next few weeks. After the amputation she will be fitted for a prosthetic leg.

She currently receives disability payments from Social Security but doesn’t want to rely on that forever.

“I figured I don’t want to be on SSI the rest of my life. I don’t want to be somebody who has to rely on government assistance,” Schaffer said.

She has been studying to be a medical assistant and wants to put her education to use once she can escape the pain.

“I want to provide for myself and provide for my family,” Schaffer said. “I don’t want to just sit at home.”

No matter what happens, Schaffer said she is mentally prepared for the future.

“Nothing can be more challenging than what I’ve already been through,” she said. “If I can get through that, then losing a limb is a walk in the park.”

Shaffer is getting support from a CRPS support group on Facebook. Her friends also set up a website to help raise money for her medical bills.