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TETHERED CORD
Tethered Cord is a condition where the bottom end of the spinal cord is fixed, so that it
can’t move freely inside the spinal bones as it should.
Before birth, the spinal cord is long, compared with the size of the baby, and ends at
the bottom of the spinal canal. As a typically developing child grows, the spinal cord
doesn’t grow, so the bottom end ‘rides up’ inside the bones; by the time the child
reaches their adult height, the cord should end at around the first lumbar vertebra
(L1). This ‘riding up’ is prevented in Tethered Cord. The spinal cord can be tethered
by lipomas (fatty lumps) in the spinal canal, scar tissue from previous surgery (such
as back closure for open spina bifida), or being attached to the skin by deep dimples
or sinuses. The spinal cord therefore becomes stretched, and symptoms may
begin during times of rapid growth, at around 2 years, 7-8 years, and with puberty.
Sometimes, symptoms appear in middle age, as deterioration of the spinal cord begins
after many years of tethering. The signs and symptoms of tethering can include:
• Back pain
• Turning in of the feet (Talipes)
• Very high arching of the instep (pes cavus)
• Cramp or pins and needles in the feet and legs
• Thinning or wasting of the calf muscles
• ‘Growing pains’, pain, weakness or fatigue during
walking
• Numbness or loss of feeling to the skin on the feet
• Bladder – frequency or urgency, leaking, recurrent
urine infections or difficulty in potty training
• Bowels – constipation, soiling.
W: shinecharity.org.uk • E: [email protected] • T: 01733 555988
SHINE – Spina bifida • Hydrocephalus • Information • Networking • Equality
Shine, 42 Park Road, Peterborough, PE1 2UQ
www.shinecharity.org.uk • [email protected] • 01733 555988
Registered Charity No. 249338 • VAT number 135 6056 23
Tethered Cord
Diagnosis is made by neurological examination, to check how the nerves and spinal
cord are functioning, and by MRI, to check where the cord ends, and to identify
anything which might be tethering it, such as lipoma. If bladder and bowel involvement
is suspected, these should be investigated separately, by a Urologist.
Tethering in children may require surgery to release the cord and/or remove the tissue
causing the tethering. The surgery aims to prevent further deterioration and relieve pain,
and timing is important for maximum benefit. While improvements in function may be
seen, they cannot be guaranteed and further de-tethering surgery may be needed if the
cord later re-tethers, for example owing to scar tissue from previous surgery.
Increasingly, adults in their middle years with spina bifida tell us that they are
experiencing symptoms of tethered cord. Although the cord has been tethered since
growth ended in their late teens, the symptoms begin after many years owing to ‘wear
and tear’ on the cord in the lumbar area, from twisting, bending etc.
Surgery to release the spinal cord may be possible to prevent further deterioration;
however the cord may have been quite damaged from years of tethering.
As the spinal cord and brain are connected, detethering surgery is sometimes carried
out to relieve symptoms of Chiari II. Chiari II is a feature of Myelomeningocoele in which
the tonsils of the cerebellum protrude into the spinal canal. (See Shine’s information
sheet on Chiari II for more.)
Created: 7Dec2016 Reviewed: Next review: December 2017
W: shinecharity.org.uk • E: [email protected] • T: 01733 555988
SHINE – Spina bifida • Hydrocephalus • Information • Networking • Equality
Shine, 42 Park Road, Peterborough, PE1 2UQ
www.shinecharity.org.uk • [email protected] • 01733 555988
Registered Charity No. 249338 • VAT number 135 6056 23