Educational content from recorded physician discussions — not medical advice. Always talk to your child's care team about your child's situation.
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Given the range of CNS pathologies in RTS, surveillance imaging may be preferable to waiting for specific symptoms to occur. Neurosurgical Manifestations and Management in Rubinstein-Taybi Syndrome · 2:10
Neurosurgical Manifestations and Management in Rubinstein-Taybi Syndrome
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Rubinstein-Taybi Syndrome: Neurosurgery
Francesco Mangano, DO, Chief, Division of Pediatric Neurosurgery: "Usually by the time patients come to us, they’ve been evaluated by many different specialists here at Children’s, and so when they a
video2:33 · Nov 2026
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Neurosurgical Manifestations and Management in Rubinstein-Taybi Syndrome
By the time RTS patients are seen in neurosurgical clinics, they have been evaluated by many specialists and have a true neurological and neurosurgical condition.
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Brain tumors can occur in RTS patients and may be benign or malignant.
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RTS patients can have upper cervical spine anomalies such as abnormal formation of the bones around C1 and C2.
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Chiari One malformation can occur at the craniocervical junction in RTS, with or without a syrinx.
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Tethered cord syndrome can occur in the lower spine in RTS patients.
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Tethered cord may present with changes in ambulation pattern such as toe-walking or abnormalities in urinary or bowel incontinence.
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Sophia was potty trained at an early age and walks normally, so her low-lying cord has been managed with observation rather than surgery.
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Sophia has completed growth and the low-lying cord has not caused issues, so surgery is unlikely at this point.
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Jet underwent tethered spinal cord surgery approximately two years ago.
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Jet's parent noticed a clinical difference in him following tethered cord surgery.
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Standard postoperative follow-up includes a visit within two weeks to assess wound healing.
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A three-month follow-up visit assesses clinical improvement related to the indication for surgery.
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After the three-month visit, patients are typically seen yearly for a few years.
clinical2:00 ↗
Younger patients are followed longer as they continue to develop; older patients may not be followed as long.
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Given the range of CNS pathologies in RTS, surveillance imaging may be preferable to waiting for specific symptoms to occur.
opinion2:10 ↗
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