Tethered Cord Syndrome: What Parents Should Know

The spinal cord is like the body’s “message highway.” It carries signals back and forth between the brain and the rest of the body so we can move, feel, and control things like going to the bathroom.

Normally, the spinal cord is able to move freely inside the spine as a child grows, without being pulled or held too tightly.

In tethered cord syndrome, the spinal cord is attached too tightly to tissues around it. As a child grows, the cord can become stretched, which may interfere with how the nerves work.

How is Tethered Cord Syndrome Diagnosed?

Sometimes, children with tethered cord have small skin changes over the lower back that can act as “clues” to an underlying spinal condition. 

Most of these skin findings are harmless, but some can be associated with Occult Spinal Dysraphism (OSD), a group of conditions where the lower spinal cord and surrounding tissues did not form typically before birth.

Examples of these skin findings include:

• A deep or unusual dimple above the buttocks 
• A patch of extra hair 
• A red or purple birthmark 
• A fatty lump or swelling 
• Skin tags or small tail-like bumps 
• Skin that looks different in color or texture 

These skin findings are called “cutaneous markers.” They do not necessarily mean a child has a spinal problem, but they can be signs that the spinal cord may be tethered or at risk for becoming tethered over time.

If your child has any of these findings, they may be referred to a Connecticut Children's pediatric neurosurgeon for evaluation. Depending on your child’s age, testing may include a spinal ultrasound or MRI.

>>Related reading: Worried about a small dent or dimple at the base of baby's spine?
 

Most children do not have symptoms at birth and many never develop symptoms at all. When symptoms do occur, they often appear gradually over time, especially during periods of rapid growth.

Because of this, at Connecticut Children’s, our pediatric neurosurgeons usually recommend monitoring over time for OSD or tethered cord syndrome, even if a child feels well.

What Symptoms Should Parents Watch For?

All kids are different, so symptoms vary for everyone. We normally educate patients and parents to notify their neurosurgeon or pediatrician of these symptoms: 

Pain

•    lower back pain
•    leg pain
•    or pain that gets worse with activity and better with rest

Changes in the Body

• a curved spine
• feet or legs that look different from each other
• or changes in walking

Nerve Symptoms

• weakness in the legs
• numbness
• or less feeling in the legs or feet

Bladder or Bowel Changes

• new daytime urine accidents after potty training
• repeated urinary tract infections

These symptoms do not always mean tethered cord syndrome, but they should be checked by a doctor. 
 

Children with tethered cord syndrome may be followed over time by multiple specialists at Connecticut Children’s.

Because the spinal cord can stretch during growth spurts, doctors may watch for new symptoms or changes in how a child moves, feels, or uses the bathroom.

Some children never develop symptoms and only need regular checkups. Others may need more testing if symptoms change or new concerns appear.

The goal of monitoring and treatment is to help protect the spinal cord and support healthy growth and development.

Let your child’s neurosurgery care team know if you or your child notice:

• new back or leg pain
• weakness
• changes in walking
• bladder accidents after potty training
• or repeated urinary infections

Every child is different, and the care team will help decide what follow-up plan is best for your child.