My son was born with Spina Bifida with tethered cord. He had no symptoms except for the dimple on his back. His first MRI was done at the age of 8 months and he was operated at the age of 10 months. He is 8 years old now and his physical parameters are fine. He is a very good sportsman and has been doing very rigorous skating. However, he has not gained 100 % control over his bladder and rectum. I am not sure it is because of some medical problem, or if he is too lazy to go to the toilet. If he is reminded, he does not wet his pants, and he does go to the toilet on his own. Only once in two months or so he passes motion in his pants in school. His Urodynamic study has been done and there seems to be no abnormality detected. His MRI was repeated last year and the MRI shows tethered cord again. His sports performance seems to be getting better and there seems to be no deterioration in his bladder and rectum situation. Kindly advise if we need to go for surgery or what next for us.

As always when answering these questions, I want to advise you to discuss this with your son’s neurosurgeon who knows all of the information, not just what is presented here. Having said that, from what you describe here, I do not think there is an indication for tethered cord releasing surgery. The most important features in your scenario are that there is no pain, change in neuromuscular function, or abnormalities on his urodynamic study.

MRI studies almost always show re-tethering of the spinal cord after primary repair or myelomeningocele and/or tethered cord release. One can almost consider this as an expected part of the post-operative healing and scaring process. The concern for symptomatic re-tethering is raised 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.

Your son’s bowel and bladder control seems quite good. Having a scheduled bathroom routine for bowel and bladder, as well as a contingency plan at school for the occasional accident, is an excellent idea. As constipation is a big problem in Spina Bifida and can explain your son’s occasional symptoms, I would discuss ruling out occult constipation with his Spina Bifida team. An abdominal x-ray can assess his stool load.

There is more information on tethered cords and bowel and bladder issues in the Fact Sheet section of SBA's Web site.