Tethered Cord

Q: My son was born with tethered cord and has not gained 100 % control over his bladder and rectum. I am not sure if it is because of some medical problem, or if he is too lazy to go to the toilet. Kindly advise if we need to go for surgery or what is next for us.

A: You should discuss this with your son's neurosurgeon who knows the full picture. MRI studies almost always show re-tethering of the spinal cord after primary myelomeningocele repair and/or tethered cord release. The concern for symptomatic re-tethering occurs when there is back or leg pain; new or progressive weakness, tightness (spasticity) or spasms of the legs; or changes in the bowel or bladder function. If these problems are due to symptomatic tethered cord, the urodynamic study usually shows changes in bladder pressure, sphincter pressure, and/or muscle contractions. For more information, review the health information sheet on tethered cord.

Q: It was confirmed by an MRI a couple of months ago that I have another tethered cord. What should I do?

A: If you already had a tethered cord release, it is very common to have MRI evidence of retethering. MRI findings of tethered cord may or may not be associated with tethered cord symptoms such as bowel/bladder problems, pain, or decreased mobility. It is helpful if there are additional findings that indicate the spinal nerves are affected. These objective findings include:

  • Change in gait
  • Inward turning of the feet
  • Tripping or falling
  • Change in bladder function compared to previous studies
  • Change in findings on manual muscle testing from baseline

From a surgical standpoint, the number of previous tethered cord releases makes a difference on the outcome of each successive surgery. There seems to be diminishing benefits from each subsequent tethered cord release, particularly for adults. Therefore, it is best to discuss what you hope to achieve from the surgery with the neurosurgeon to determine if these goals are likely to be achieved.

Q: Have you come across shoulder or sacral (lower spine) dimples? What do they indicate?

A: The dimples in the shoulder areas are not related to SB. They are innocent and do not indicate any problem. However, a dimple at the base of the spine, also known as a sacral dimple may require further assessment. They are not usually related to Spina Bifida providing ALL of the following are true:

  • The dimple or pit is located within the crease between the two buttocks (also called the natal cleft or gluteal cleft).
  • The dimple is within 1 inch of the anus and is not bigger than ¼ inch in size.
  • The base of the dimple can be seen.
  • There is no hair, skin color change, blood vessels (telangiectasias), or blood vessel tumors (hemangiomas) around the spine.
  • There is no fatty mass felt under the skin.
  • The buttocks crease (gluteal cleft) is straight.
  • There are no abnormal neurologic findings on exam (i.e. weak legs, abnormal reflexes)
  • If any of the above statements are not true or there are dimples higher up on the back (above the buttocks crease), further testing is advised.

For more information, review SBA’s health information sheet on Spina Bifida Occulta.