Tethered Cord Syndrome

The spinal cord extends from the base of the brain through the boney spine to the lower back. Soon after conception, special cells come together to form a tube that will become your baby's spinal cord. If this tube does not completely close, the spinal cord can become tethered. The cord is said to be "tethered" when it is abnormally attached within the boney spine.

There are two ways the spinal cord can become tethered.

If your child was born with spina bifida (open spine) then the cord could become tethered because of the scar tissue that resulted from surgically closing the spine at birth. This scar tissue causes the cord to attach abnormally.
The spinal cord can also become tethered with spina bifida occulta. This can occur without visible outward signs although usually half the children have visible symptoms.

In both cases, the tube that forms the spine failed to completely close during pregnancy.This may not be a problem until the child develops symptoms. Normally the spinal cord is able to move freely when your child bends or stretches but when it is tethered, it is stretched, especially with those movements. This abnormal stretching puts tension on the cord that can cause permanent damage to the muscles and nerves that control the legs, feet, bowel and bladder. Early detection and treatment is important to prevent this from occurring.

Signs and symptoms

Your child may have one or more of the following signs or symptoms:

Skin on the lower part of his/her back:

Fatty mass
Hairy patch or discoloration
Skin tags
Dimples

Bowel or bladder problems:

Changes in bowel control
Incomplete emptying of the bladder
Frequent urinary tract infections
Changes in bladder pressure as seen on special testing (called urodynamics)
Difficulty in toilet training younger children
Diaper may always be wet between diaper changes

Orthopedic problems:

Persistent back pain
Increasing curvature of the spine (scoliosis)
Loss of sensation in the legs or feet
Unequal changes in size of the legs or feet
Stumbling or walking changes
Weakness in legs or feet

Diagnostic tests

If a child has any combination of the above signs and symptoms, an MRI (magnetic resonance image) can be done. This gives a detailed 3-dimensional picture of the spine and the spinal column. The exact incidence of tethered cord is unknown because it often goes undetected.

Treatment

If your child has a tethered cord and is having symptoms, it can be corrected by surgically releasing the spinal cord so it can hang freely within the spinal canal.

The surgery and results

The length of time for the actual operation is approximately 4 to 6 hours, but it can vary depending on how much tethering has occurred.

The goal of surgery is to prevent further deterioration. If not treated, 90 percent will develop irreversible neurological problems. If repaired, there is less than 2 percent chance of leaving the patient with new deficits. Back pain usually improves but bladder dysfunction usually does not. Strength may improve and there is a 50 percent chance that sensation and motor problems will return to normal.

Hospital stay

The usual length of stay is 4 to 5 days. Your child will need to lie flat for the first 72 hours after surgery to prevent any leaking of spinal fluid from the back incision. After that time, he/she can gradually sit up and resume former activity levels. The first 2 to 3 days will be spent in the Pediatric Intensive Care Unit (PICU) where your child will be closely monitored by specially trained nurses. You may stay with your child in the PICU or at the Ronald McDonald House one block away from the hospital.

Pain control

Our goal is to make your child comfortable. Pain medication can be given by mouth and through the intravenous line (IV). The nurses will be checking your child frequently to make sure he/she is comfortable. It is important for you to let the nurses know if you think your child may be hurting.

After discharge

Your child may gradually increase his/her activity as he/she feels like it. Frequent rest periods may be needed until he/she regains previous energy levels. You may get the incision wet although do not soak in the tub until after the stitches are removed. Be sure to call if he/she develops a fever over 100.8 degrees or has any redness or drainage at the incision site.

If you would like more information, you may call Cathy Cartwright, RN, Clinical Nurse Specialist for Pediatric Neurosurgery at (573) 882-4908.