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PubMed This is a summary of 15 peer-reviewed journal articles Updated
Pediatric Neurosurgery

Building Your Child's Care Team

At a Glance

Children with lipomyelomeningocele (LMMC) require a multidisciplinary care team led by a pediatric neurosurgeon, pediatric urologist, and pediatric orthopedist. Receiving care at a specialized spina bifida clinic ensures comprehensive monitoring of neurological, bladder, and bone health.

Because lipomyelomeningocele (LMMC) is a rare and complex condition, your child’s care should not rest on the shoulders of just one doctor. The most successful outcomes are typically achieved through a multidisciplinary team—a group of specialists who work together to monitor your child’s neurological, urological, and orthopedic health [1][2]. Assembling this team early ensures that every aspect of your child’s development is protected as they grow.

The Core Specialist Triad

While many doctors may be involved, three specific specialists form the foundation of an LMMC care team:

  1. Pediatric Neurosurgeon: This is the lead specialist who manages the spinal cord itself. Because LMMC is rare, it is critical to find a neurosurgeon with specific expertise in complex spinal lipomas and untethering [3][4]. They should be experienced in using intraoperative neurophysiological monitoring to protect nerve function during surgery [5][6].
  2. Pediatric Urologist: The nerves that control the bladder are often the most sensitive to tethering. A urologist with experience in neurogenic bladder management will use urodynamic studies (UDS) to monitor how well the bladder is filling and emptying [7][8].
  3. Pediatric Orthopedist: As children with LMMC grow, they are at higher risk for spinal curves (scoliosis) or foot deformities [9][10]. An orthopedist monitors bone and joint alignment to ensure your child remains as mobile as possible.

What to Bring to Your First Consultation

Specialists need high-quality data to create an accurate care plan. For your first visit to a major pediatric spine center, ensure you have copies of the following:

  • Spinal MRI: Ideally, this should include thin-slice axial images, which are essential for seeing the exact “seam” where the fat meets the spinal cord [1][11].
  • Urodynamics (UDS) Report: This provides the “baseline” of your child’s bladder function. Changes in these scores can sometimes be the first sign that the spinal cord is tethering [8][12].
  • Neurological Exam Notes: Detailed notes on your child’s strength, reflexes, and movement from their pediatrician or initial neurologist.

Tip: The sheer volume of information provided by specialists during initial visits can be overwhelming. Bring a notebook, or ask a support person to come with you to take notes, so you can focus entirely on asking questions.

Finding the Right Center

Because of the technical difficulty of LMMC surgery (see Surgery and the ‘Watch and Wait’ Debate), many families choose to seek care at a comprehensive spina bifida clinic or a specialized pediatric hospital [1][13]. These centers often have “transition” programs that help manage your child’s care from infancy all the way through adulthood, ensuring they never “fall through the cracks” of the medical system [14][15]. If a local surgeon only sees one or two cases of LMMC a year, it may be worth seeking a second opinion from a high-volume center where these procedures are performed weekly [3].

Common questions in this guide

Which doctors are essential for treating my child's lipomyelomeningocele?
The core team for LMMC includes a pediatric neurosurgeon to manage the spinal cord, a pediatric urologist to monitor bladder function, and a pediatric orthopedist to address bone and joint issues like scoliosis or foot deformities.
What tests and records should I bring to my child's first LMMC consultation?
You should bring high-quality copies of your child's spinal MRI with thin-slice axial images, their baseline urodynamics report, and detailed neurological exam notes from their pediatrician or neurologist.
Why does a child with LMMC need to see a pediatric urologist?
The nerves that control the bladder are often the most sensitive to spinal cord tethering. A pediatric urologist monitors for neurogenic bladder and uses urodynamic studies to ensure the bladder is filling and emptying properly.
What should I look for in a neurosurgeon for my child's LMMC?
You should look for a pediatric neurosurgeon with specific, high-volume expertise in complex spinal lipomas and untethering procedures. It is also critical that they use a dedicated neuro-monitoring team during surgery to protect nerve function.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many radical resections for LMMC do you perform each year, and what are your personal success and complication rates?
  2. 2.Do you work directly with a specific pediatric urologist who has experience with neurogenic bladders in LMMC?
  3. 3.What is your specific approach to 'radical resection' versus 'partial debulking' for my child's specific lipoma subtype?
  4. 4.Will a dedicated neuro-monitoring team be present in the operating room to monitor BCR and SSEP signals?
  5. 5.How do you coordinate with other specialists if my child develops orthopedic issues like scoliosis?

Questions For You

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References

References (15)
  1. 1

    Delayed Diagnosis of Lumbosacral Lipomyelomeningocele With Tethered Cord: A Case Report.

    Rodriguez Campian FG, Vargas Castañeda AC, Puch Ramirez MD, et al.

    Cureus 2025; (17(9)):e92310 doi:10.7759/cureus.92310.

    PMID: 41103844
  2. 2

    Adult Type II diastematomyelia with tethered cord and associated spinal anomalies: A case report.

    Thapa S, Kunwar B, Ghimire A, et al.

    Radiology case reports 2025; (20(12)):5902-5908 doi:10.1016/j.radcr.2025.08.036.

    PMID: 41140561
  3. 3

    Childhood angular kyphosis: a plea for involvement of the pediatric neurosurgeon.

    Cornips E, Koudijs S, Vles J, van Rhijn L

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2017; (33(6)):973-981 doi:10.1007/s00381-017-3389-y.

    PMID: 28343240
  4. 4

    Early- and long-term surgical outcomes in 109 children with lipomyelomeningocele.

    Vora TK, Girishan S, Moorthy RK, Rajshekhar V

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2021; (37(5)):1623-1632 doi:10.1007/s00381-020-05000-y.

    PMID: 33404713
  5. 5

    Intraoperative neurophysiology in pediatric neurosurgery: a historical perspective.

    Sala F

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2023; (39(10)):2929-2941 doi:10.1007/s00381-023-06155-0.

    PMID: 37776333
  6. 6

    The evolution of pediatric neurosurgery: reflection of personal experience of the last half-century.

    Tomita T

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2023; (39(10)):2571-2582 doi:10.1007/s00381-023-06068-y.

    PMID: 37486438
  7. 7

    Risk of occult spinal dysraphism based on lumbosacral cutaneous manifestations.

    Shields LB, Mutchnick IS, Daniels MW, et al.

    SAGE open medicine 2021; (9()):20503121211037172 doi:10.1177/20503121211037172.

    PMID: 34394932
  8. 8

    Analysis of factors affecting permanent clean intermittent catheterization and bladder function after primary neurosurgical repair of lipomyelomeningocele.

    Ji Y, Kim SW, Han SW, Lee YS

    Neurourology and urodynamics 2023; (42(1)):177-187 doi:10.1002/nau.25064.

    PMID: 36259772
  9. 9

    Lipomeningomyelocele with Fatty Filum Terminale in a Patient with Jarcho-Levin Syndrome: A Rare Association Requiring Special Attention.

    Singh S, Das KK, Kumar R

    Journal of pediatric neurosciences 2017; (12(4)):386-388 doi:10.4103/jpn.JPN_108_17.

    PMID: 29675085
  10. 10

    Cartilage within lipomyelomeningocele and ulnar longitudinal deficiency syndrome as VACTERL association, alliance in SHH/GLI3, and Wnt pathway: illustrative case.

    Shimekit MA, Yesuf EF, Teferi SM, Lemma MG

    Journal of neurosurgery. Case lessons 2024; (7(18)).

    PMID: 38684130
  11. 11

    Fatty filum terminale (FFT) as a secondary tethering element in children with closed spinal dysraphism.

    Gupta A, Rajshekhar V

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2018; (34(5)):925-932 doi:10.1007/s00381-017-3700-y.

    PMID: 29260294
  12. 12

    Predictive value of intraoperative bulbocavernosus reflex during untethering surgery for post-operative voiding function.

    Cha S, Wang KC, Park K, et al.

    Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology 2018; (129(12)):2594-2601 doi:10.1016/j.clinph.2018.09.026.

    PMID: 30448714
  13. 13

    Pediatric neurosurgery training during residency in Switzerland and the need for dedicated subspecialization training.

    Greuter L, Licci M, Guzman R, Soleman J

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2024; (40(6)):1889-1900 doi:10.1007/s00381-024-06343-6.

    PMID: 38456920
  14. 14

    Current opinions regarding care of the mature pediatric urology patient.

    Szymanski KM, Misseri R, Whittam B, et al.

    Journal of pediatric urology 2015; (11(5)):251.e1-4.

    PMID: 26148437
  15. 15

    Various aspects of transition of care for adolescents with urological conditions.

    Dobrowolska-Glazar B, Chrzan R, Bagłaj M

    Advances in clinical and experimental medicine : official organ Wroclaw Medical University 2022; (31(2)):157-163 doi:10.17219/acem/142758.

    PMID: 35148571

This page provides educational information on building a care team for lipomyelomeningocele. It does not replace professional medical advice. Always consult your child's healthcare team regarding their specific treatment plan.

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