But a problem no one had noticed before is now obvious: Surgery can't cure the painful nerve damage across my ribs and part of my back, which is causing neuropathic pain.
At 21, I am referred by my surgeon to the pain center at Boston Children's, which routinely treats college-age patients.
The Oucher Scale (www.oucher.org) helps young children gauge their pain so doctors can know if a prescribed treatment is working. Caucasian and Hispanic versions also exist.
(Photo ) Mary J. Denyes And Antonia M. Villaruel)
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Children Living With Chronic Pain: Ken Goldschneider, head of pain management at Childrens Hospital Medical Center in Cincinnati, and Susmita Kashikar-Zuck, Associate Professor of Pediatrics at the Cincinnati Children's Hospital Medical Center, will be online at 11 a.m.
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"Everything you're telling us makes sense," says a pediatric anesthesiologist there. His simple language belies what a breakthrough this is. "It all fits. We think we can help."
A psychologist asks how I imagine the pain, and I describe a picture I've never shared: tiny construction workers with hard hats clambering around inside me, whacking at me with their shovels. Together, we talk about how to make the bad guys disappear. I don't want to hurt them, I explain, not quite understanding why -- so we imagine a flower blooming inside my torso that gathers them up before dissolving.
My doctors prescribe a tricyclic antidepressant, reassuring me that I'm not depressed but that the drug calms hyperactive nerves. They also add a medication originally designed for epilepsy, and later I begin using lidocaine skin patches.
All these drugs are popular choices, and they leave me dizzy, fatigued and battling some short-term memory loss. But they also work. My initial experience is typical. While not every young person treated for chronic pain ends up cured, many can come close. Rarely do pediatric pain specialists prescribe more powerful drugs such as narcotics.
At first, it seems, I am a success story; I abandon drugs after a year and stay largely pain-free. But seven months later, the pain surges back. I return, with great reluctance, to medication, which doesn't work as well this time around.
Despite occasional efforts to evict these drugs from my life, I still need them today.
"Do pediatric pain patients become adult pain patients?" wonders Goldschneider. "That's one of the great unknowns."
Still Unknowns
There are other gaping unknowns in pediatric pain. One is how well treatments work; a number have not been rigorously tested in kids with pain -- or even adults with pain, in some cases. In early 2004, the University of Wisconsin began enrolling the first of 100 youngsters with chronic pain in an acupuncture study; half will receive sham needles and half will get the real thing. The study is expected to last at least another year.
Why certain kids develop chronic pain is also largely a mystery. Pain specialists have noticed that around two-thirds of their patients are unduly anxious, though they don't know whether that's a cause or consequence of pain. MRI studies have shown that anxiety heightens the nervous system, boosting pain.
Yet despite the physical and emotional toll that can be exacted by chronic pain, most "kids just keep going," said Tosi.
Somehow, I did, too.•
Jennifer Couzin is a staff writer at Science magazine, where she covers medicine.
