Tethered Cord Syndrome

(Occult Spinal Dysraphism Sequence)

Fact: Exact incidence is unknown because many cases are not diagnosed until adulthood, if ever.

What is Tethered Cord Syndrome?

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord because the spine cannot freely move. Normally, the spinal cord hangs loose in the canal, freely moving up and down with growth, bending and stretching. Tethering can happen before or after birth in children and adults; and most often occurs in the lower (lumbar) level of the spine. This syndrome is closely associated with spina bifida. It is estimated that 20 to 50 percent of children with spina bifida defects repaired shortly after birth will require surgery at some point to untether the spinal cord.

What causes Tethered Cord Syndrome?
TCS is closely related to Spina Bifida but other causes can include:
  • Dermal sinus tract (a rare congenital deformity)
  • Diastematomyelia (split spinal cord)
  • Lipoma (a benign, fatty growth)
  • Tumor
  • Thickened/tight filum terminale (a delicate filament near the tailbone)
  • A history of spine trauma
  • A history of spine surgery
What is the prognosis?

With treatment, individuals with tethered spinal cord syndrome have a normal life expectancy.  However, some neurological and motor impairments may not be fully correctable.  Surgery soon after symptoms emerge appears to improve chances for recovery and can prevent further functional decline.

  • Constipation 
  • Decreased sensation in your pelvic area 
  • Diarrhea 
  • Difficulty starting urinary stream 
  • Frequency of urination 
  • Frequency of urination at night 
  • History of severe growing pains during childhood and adolescence 
  • Keeping your knees bent at night 
  • Leg pain 
  • Low back pain 
  • Numbness under the soles of your feet 
  • Occasional incontinence for stools 
  • Urinary incontinence 
  • Urinary retention 
  • Urinary urgency
Symptoms in Children

  • Lesion on the lower back
  • Fatty tumor or deep dimple on the lower back
  • Skin discoloration on the lower back
  • Hairy patch on the lower back
  • Back pain, worsened by activity and relieved with rest
  • Leg pain, especially in the back of legs
  • Leg numbness or tingling
  • Changes in leg strength
  • Deterioration in gait
  • Progressive or repeated muscle contractions
  • Leg deformities
  • Spine tenderness
  • Scoliosis (curvature of the spine)
  • Bowel and bladder problems

Want to learn more?

The following are organizations and/or websites dedicated to providing information and education surrounding Tethered Cord Syndrome. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.

American Association of Neurological Surgeons
Chiari Connection International
Chiari & Syringomyelia Foundation
Conquer Chiari
Madison's Foundation
National Institute of Neurological Disorders And Stroke
Spina Bifida Association