As your child grows, there may be an extra bend (Scoliosis and/or Kyphosis) at the site of the Spina Bifida. In some cases this can be a source of pain. The Orthopaedic Specialists will monitor any potential spinal problems and advise you as necessary.
A common problem for children with Spina Bifida is a tethered spinal cord. Although the exact frequency with which it occurs isn’t entirely known, it is estimated that from 20-50 percent of children with Spina Bifida will, at some time, require surgery to untether the spinal cord, making this the second most common operation (behind shunt operations) for these children.
During the early stages of a pregnancy, the spinal cord of a baby extends from the brain all the way down to the tailbone region of the spine. As the baby develops the spine grows faster than the spinal cord, so the end of the spinal cord appears to rise, or ascend, relative to the spine. By the time a baby is born, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae, in about the upper part of the lower back.
For a baby with Spina Bifida, the spinal cord is attached to the surrounding skin and at birth is located further down the back than normal. It is therefore prevented from ascending normally and is referred to as ‘tethered’. As the child grows, the spinal cord can become stretched, damaging the spinal cord by directly stretching it and interfering with the blood supply to the spinal cord. This can result in progressive neurological, urological, or orthopaedic deterioration.
The most common period for tethered cords to become problematic is during a growth spurt where the spinal cord normally ascends up the spinal canal in response to the increase in height. For children with Spina Bifida, because the spinal cord is tethered in place, it cannot move upwards as normal.
Children with spinal cord tethering can develop many different symptoms and signs. Back pain, typically brought on or worsened by activity and relieved with rest, can be a sign of tethering. Sometimes the back pain is also associated with leg pain, even in areas that are numb. Changes in leg strength, or deterioration in gait (walking), trips or falls can be signs of tethering. Progressive or repeated muscle contractures or orthopaedic deformities of the legs or feet, and scoliosis, may also be a sign of tethering as well. Changes in bowel or bladder function can also be signs of tethering. Many of the symptoms and signs of tethering can be caused by other problems. Your child’s Neurosurgeon will advise you on the likely causes of the signs and symptoms in each case.
A child with mild back pain who is otherwise stable might be managed without surgery as long as they remain stable and any pain is manageable. The timing of surgery is important. The longer deterioration is allowed to continue, the less likely function will return to the level prior to surgery. The timing depends upon the magnitude and rapidity of the changes. Progressive or severe pain, loss of muscle function or deterioration in gait, or changes in bladder or bowel function usually require an operation to prevent further deterioration.
The de-tethering procedure usually involves opening the scar from the prior closure. Occasionally, an incision may be made perpendicular to the original scar, particularly if the original closure was horizontal on the back. Recovery in the hospital is generally about two to five days. Pain is usually not severe, as the child usually has some degree of numbness in that area anyway. The child is usually back to fairly normal activities within a few weeks. Most children require only one de-tethering procedure, but a 10-20 percent minority require repeated operations as they grow, particularly those who undergo de-tethering very early in life (as toddlers or young children). These children frequently require additional de-tethering procedures later, as they continue to grow, but once “adult” height is reached, clinical deterioration from tethering becomes much less frequent.