For Some, Birth Defects Are Diagnosed In Adulthood
Posted May 2, 2001 12:53 p.m. EDT
FAYETTEVILLE — Have you ever had pain that you could not explain? Imagine having it for most of your life. Not knowing what is wrong can be worse than the diagnosis.
"I thought I was clumsy, I thought I was inept," says Cindy Rogers. For most of her life, she has had problems doing simple things.
"I always had trouble as a child riding a bicycle. The seat would hurt, and I would complain. My mother would say 'you're fine, just go on,'" she says.
Rogers also had trouble sitting, standing and running. When she was in her early 30's, a doctor diagnosed her condition with the help of an MRI. Many people are diagnosed with the birth defect as adults.
Rogers found out she hasspina bifida occulta.
"It just floored me," she says. "It answered questions that I had, and that was such an important thing."
"Most people go through life if they have it and may not know," says Dr. Richard Toselli of the UNC Spine Center.
Unlike the more serious form of spina bifida that we typically see in babies, Toselli says most cases of occulta are not noticable. It is simply a tiny bony defect in the spine.
Toselli says a small percentage of patients do experience symptoms and should seek medical attention.
"Patients who have pain, patients who have skin changes over their low back and patients who have neurologic deficits -- namely weakness, numbness or difficulty with their bladder -- those patients are more likely to get a workup," he says.
"[The] first thing is attitude," says Rogers. "Try to have a positive attitude, try to learn what to do to help myself."
Like Rogers, most people with spina bifida occulta are diagnosed as adults. Doctors say while there is no cure, most patients can still live active lives.
"Maybe I go slower than other people, maybe I go a little bit differently, but I still go," she says.
For Cindy Rogers, every day is about the quality of the journey, not the time it takes to get there.
Doctors estimate that as many as 10 percent of the population has spina bifida occulta.
There is no cure, but there are treatments.
In the most serious cases, patients opt for minor surgery, physical therapy and pain medication to help then cope with their symptoms.
In most cases, people with occulta require no treatment.