Normally the spinal cord moves freely up and down within the spinal canal as we move. In all children with myelomeningocele, the spinal cord ends lower down than the normal population. They also have scarring at the end of the spinal cord simply because they have had surgery to close the neural tube.
Technically, ALL children with myelomeningocele have a tethered cord because that is their anatomy. This does not mean that they will have symptoms or problems related to the cord tethering, which most often does not require any treatment.
Tethered cord is rarely an issue in children with myelomeningocle. It is almost always asymptomatic. However in very rare circumstances, these children may experience symptoms during growth where tension (stretching) develops in their spinal cord due to the increased length of the spine. These symptoms are referred to as tethered cord syndrome . This is a clinical diagnosis (i.e. made based on a child’s symptoms and signs). MRI is not helpful as all these children will have a low-lying spinal cord.
Symptoms of a tethered cord syndrome may include:
- Loss of muscle function or weakness
- Increased muscle tone/ stiffness. You may notice some of the muscles in your child’s legs feel tighter.
- Back or leg pain.
- Loss of sensation. You may notice that your child’s loses the ability to detect touch or hot and cold sensation on parts of their lower limbs.
- Rapid progression of curvature of the spine (scoliosis)
- Changes in bowel or bladder function which causes changes in their toileting abilities
- Progressive change in foot shape. You may a change in the way shoes fit.
Tethered cord and tethered cord syndrome are much more important in children with other forms of spinal anomaly (i.e. not myelomeningocele spina bifida). They are dealt with separately.