Our 15-yr. old daughter was recently diagnosed with a tethered spinal cord, Spina Bifida Occult and an anterior meningocele. Additionally there is a growth, possibly a teratoma, near the meningocele. She also has a malformed coccyx, shaped like a scimetar. We believe she should have the spinal cord untethered and the growth removed, but we need to decide wether or not to operate on the meningocele as we understand that this could lead to bowel/bladder incontinence and worse if the meningocele has nerves in it. At this point she is completely neurologically intact, and we only realized she had any problems when she began to experience pain in her lower back/left buttock. This pain is easily controlled with tylenol or advil, but she is probably not done growing. Her little sister, at about 5 mos. of age, was found to have a teratoma that was crowding her colon and interfering with bowel movements and a scimitar-shaped coccyx. Resulting surgeries on the younger child have left her with no bladder or bowel control. Both she and our older daughter have a dimple at the base of their spine. Our son, the middle child has no anomalies and an MRI shows he's AOK. Any information or advice will be greatly appreciated.
Meningomyeloceles and its complications (which includes tethering and tumors) are very tough cases that require expert pediatric neurosurgeons for evaluation and treatment. Untethering the cord can provide relief of neurological symptoms in up to 50% children according to one report. You are correct about the meningomyelocele repair risks, and although your younger daughter did alright with her surgery keep in mind that it was at 5mos and not 15 yrs. Take it one step at a time. Find a good surgeon preferably at a major academic hospital or someone you trust. Unless your daughter starts having serious neurological complaints such as incontinence, there is no urgency in repairing the meningomyelocele generally speaking. For more information try these sites:
Beth Israel Med Ctr: Spina Bifida
Children w/ SPina bifida resource page for parents
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