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Born with it, diagnosed later: How tethered cord syndrome can reveal itself as a child grows

Tethered cord signs can look like something else at first; even adults may not know they have it

Some signs of tethered cord syndrome may be visible during infancy, while others emerge as a child grows. (fotostorm, University Health)

A small dimple on a baby’s lower back can be easy to overlook. So can a developing curve in a child’s spine. Delayed toilet training may be attributed to multiple other possible causes.

In some children, these seemingly unrelated signs can point to tethered cord syndrome -- a condition where the spinal cord attaches to tissue instead of moving freely within the spinal canal.

“Tethered cord is a congenital condition, which means you’re born with it,” said Dr. Izabela Tarasiewicz, pediatric neurosurgeon with University Health.

Because tethered cord might not cause obvious problems at birth, understanding its signs can help families know when to ask for an evaluation.

How growth can reveal a tethered cord

Normally, the spinal cord can move within the spinal canal. With tethered cord, tissue attaches to or anchors the cord, pulling on the nerves.

A child may be born with the condition but not develop noticeable symptoms until growth and everyday movements increase that tension.

“As you move, as you grow, and as you do flexion, extension -- which we do daily -- you pull on your nerves and you injure your nerves,” Dr. Tarasiewicz said.

Symptoms depend on which nerves are affected and the severity of the tethering. Some signs may be visible during infancy, while others emerge as a child grows.

One of the earliest signs of tethered cord syndrome can be an unusual mark on the lower back, such as a birthmark. (University Health)

Signs parents and pediatricians may notice

One of the earliest clues can be an unusual mark on the lower back, such as:

  • A deep or unusual dimple
  • A small tuft or patch of hair
  • A birthmark or scar-like area
  • A lump, sac or other abnormal skin tissue

These features do not prove tethered cord by themselves, but they may prompt a pediatrician to recommend further evaluation.

In older babies and children, signs can involve bladder or bowel function. A child might have unexplained difficulty with toilet training, urinary incontinence or constipation. Other possible symptoms include back or leg pain, numbness, weakness, foot abnormalities, changes in walking or scoliosis.

Because these concerns can appear unrelated, tethered cord might not be the first explanation that comes to mind. Parents should talk with their child’s pediatrician when symptoms persist, worsen or cannot otherwise be explained.

How tethered cord syndrome is diagnosed

For babies with a suspicious dimple or another lower-back skin finding, a pediatrician may order a lumbar ultrasound during the first few months of life.

After that early window, an MRI can provide a more detailed image of the spinal cord and surrounding tissues. An MRI might also be considered when a child has unexplained bladder symptoms, delayed toilet training, scoliosis or other concerning signs.

A pediatric neurosurgeon can review the imaging alongside the child’s symptoms and determine whether treatment or continued monitoring is appropriate.

Adult symptoms of tethered cord

Sometimes tethered cord does not cause symptoms until adulthood, when people develop lower back pain or urinary dysfunction that they may attribute to other causes.

“Six to 7% of adults with chronic back pain will have a tethered cord,” Dr. Tarasiewicz said.

Urinary dysfunction is another symptom. Whether these common symptoms are caused by tethered cord can be determined by an MRI, she said, and minor cases can be resolved with a simple surgery.

It's not uncommon for tethered cord syndrome to not cause symptoms until adulthood. (Kindel Media via Pexels)

What treatment can involve

When surgery is recommended for tethered cord syndrome, the goal is to release the tissue that anchors the spinal cord and relieve tension on the nerves. University Health’s pediatric neurosurgeons use a minimally invasive approach to correct tethered cord syndrome when appropriate.

Children may also benefit from specialists in urology, orthopedics, rehabilitation or therapy, depending on how the condition affects bladder and bowel control, mobility or spinal development.

University Health’s multidisciplinary team coordinates these different aspects of care and can continue supporting children as their needs change.

Parents who notice concerning symptoms can begin by speaking with their pediatrician, while adults should talk with their primary care provider.

Learn more about tethered cord care at University Health or call the specialty clinic at 210-743-1400.


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