Like many moms, Brenda Jackson worried about the transition to middle school for her son Sam. He had had mysterious wetting accidents ever since potty training. Doctors had diagnosed an overactive bladder and tried everything — behavioral interventions, medications and dietary changes.
Nothing worked. Fortunately, Sam attended a small Montessori school where all the kids knew and accepted each other.
But as he was getting ready for fifth grade, the specter of middle school, and the teasing that comes with early adolescence, loomed. “That’s a new ball game,” says his Brenda. “We knew we had to take care of this.”
Because Sam also had constipation, the urologist at his Midwestern children’s hospital sent him to a gastroenterologist to see if addressing it would reduce Sam’s wetting accidents. The urologist put him on a medication meant to stop the spasms that were making him lose bladder control. It didn’t work.
It was such a relief to know that Sam was able to have a less invasive procedure. Boston Children’s made a very stressful process easier and had the confidence to take care of it.
Sam’s doctors and parents continued to search for answers. A dimple on the boy’s lower back suggested something wrong with his spinal cord, so Sam was referred for an MRI of his spine.
“We got a call the next morning that Sam had a thoracic syrinx [a collection of fluid inside the spinal cord’s central canal] and that we needed to see a neurosurgeon,” says Brenda. “The neurosurgeon at our hospital had never seen one.”
The local radiologist and neurosurgeon thought the fluid was compressing the nerves that controlled Sam’s urinary tract.
After two more MRIs, the doctors recommended surgery for the syrinx. It would involve inserting a shunt (tube) inside Sam’s spinal cord to drain the fluid into his abdomen — a highly invasive operation that carries a risk of causing paralysis. Plus, shunts often fail over time and have to be replaced.
Something didn’t ring true for Brenda. Her skepticism grew. She researched Sam’s condition and found few pediatric hospitals had published anything about it. One of those that did was Boston Children’s Hospital.
Getting a second opinion
Brenda decided to get an online second opinion from Boston Children’s.
Dr. Mark Proctor, interim chief of neurosurgery, didn’t see the syrinx as the main issue: “I really think the problem is the tethered spinal cord.”
When Proctor and Dr. Samuel Nurko, a gastroenterologist at Boston Children’s reviewed Sam’s MRI, it showed a tethered spinal cord: the strip of tissue attaching the bottom of the cord to his backbone had thickened and was likely putting a strain on the cord as he grew.
Proctor suggested Sam have an operation to untether it before he hit puberty, because growth spurts can put increased tension on the spinal cord and aggravate urinary and bowel symptoms.
Getting to the bottom of Sam’s bladder problem
“The hospital worked across the three departments to coordinate schedules, so we only needed to come out once for the two tests, three appointments and the surgery,” says Brenda. “The staff was very clear and knowledgeable, but did not over-promise anything.”
Based on Sam’s test results and medical history, Bauer suggested stopping his urinary medicine. “They were trying to stop the spasms, but that was making it more difficult for him to empty his bladder,” Bauer explains.
“He then became incontinent for a different reason — because he wasn’t emptying his bladder.”
The next step was Sam’s cord untethering surgery.
“Sam’s family understood there was no guarantee it would solve the problem,” says Proctor. “They had realistic expectations. Sometimes by simply de-tethering the spinal cord, the syrinx could get smaller, but ultimately, the syrinx is not what was causing the problem,” Proctor says.
The surgery lasted an hour. Sam had it on a Friday, left Boston Children’s the following Tuesday and was back at school the following Monday. “The thoracic shunt procedure would have required two weeks in the hospital and possibly missing a semester of school,” says Brenda.
When Sam returned for a visit two months after surgery, his daytime wetting was gone, and he was prescribed a different medication to curb his ongoing nighttime accidents.
“He can feel the sensation of needing to urinate much better now,” says Brenda. “The tethered cord was interfering with the urge feeling. He has better control and his bladder isn’t spasming anymore.”
Sam will have his bladder and bowel function tracked at home. Next January, he will return to Boston Children’s for a check-up. Until he stops growing, he will see Proctor once a year.
But for now, Sam is back to his life at school, participating in Boy Scouts, playing golf and helping teach social skills to kids with autism through a peer-to-peer program (he gets to practice at home with his brother, who has autism).
“It was such a relief to know that Sam was able to have a less invasive procedure,” says Brenda. “Boston Children’s made a very stressful process easier and had the confidence to take care of it.”