Primary care
Recommendation 1
Physical therapy can be benficial in postsurgical recovery. 10-20% of children may need a second untethering surgery if symptoms return.
This information is AI generated and has not yet been reviewed by a specialist physician. AI can make mistakes.
Recommendation 1
MRI imaging to observe position/attachment of spinal cordRecommendation 2
can also use CT and myelogram.Recommendation 1
MRI imaging to observe position/attachment of spinal cordRecommendation 2
can also use CT and myelogram.ZebraMD is partnering with Ambry Genetics for clinical-grade whole genome testing for rare diseases. Ambry accepts insurance. If you don’t have a physician to order this test, join our referral list and our team will reach out.
Recommendation 1
Surgical untethering recommended for all children to prevent progressive deteriorationRecommendation 2
recommended for all symptomatic adults.Recommendation 1
Physical therapy can be benficial in postsurgical recovery. 10-20% of children may need a second untethering surgery if symptoms return.Recommendation 1
Referral to neurosurgery for treatment and physical therapy for follow-up care. Referral to Medical Genetics Department, if available. Initial virtual care is also available through organizations like TeleRare Health.Follow to receive regular updates to the latest research development on this disease via email newsletter.