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| Disease found: | Tethered cord syndrome |
| Current as of: | Thu Nov 21 2024 |
| Disease Overview: | mostly in utero/newborn/infants but can be diagnosed as late as adulthood: Tissue attachments, often at the base of the spinal cord, limit its movement and cause stretch tension on the spinal cord. [more info] |
| Signs and Symptoms: | Progressive leg and lower back pain, leg numbness, gait disturbances, leg and spine deformity, bladder and bowel incontinence. Often linked with spina bifida. [more info] |
| Diagnosis: | MRI imaging to observe position/attachment of spinal cord; can also use CT and myelogram. [more info] |
| Treatment: | Surgical untethering recommended for all children to prevent progressive deterioration; recommended for all symptomatic adults. [more info] |
| Clinical Management: | Physical therapy can be benficial in postsurgical recovery. 10-20% of children may need a second untethering surgery if symptoms return. [more info] |
| Referral: | 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. |
| Clinical Trials: | One clinical trial in the US is recruiting (NYC, New York); there are additional international trials. |