Introduction

Tethered cord syndrome happens when the spinal cord is attached to the lower part of the spinal column and cannot move freely. 

The spinal cord is a bundle of nerves that connects the brain to the body, helping your child move and feel things. It sits inside the spinal column.

The spinal column is made of 33 small bones called vertebrae. These bones protect the spinal cord.

When the spinal cord is attached to the wall of the spinal column, it pulls tightly and limits movement. The cord can stretch out and become damaged over time, stopping blood from flowing to the nerves. 

Tethered cord syndrome can happen when:

• the spine does not develop properly during pregnancy
• there is damage or scar tissue on the spine after birth.

Many children do not develop any signs or symptoms. When they do, it is often during growth spurts as the spinal cord stretches. 

Visible signs can include:

• a hairy patch on the lower back
• a sacral dimple - a small hollow above the buttocks
• lipoma - a fatty lump under the skin
• one leg or foot is longer than the other.

Symptoms can include:

• back or leg pain
• trouble walking
• numbness or weakness in the legs and back
• changes in foot shape
• haemangiomas - discoloured skin patches
• loss of bladder or bowel control
• progressive scoliosis - curved spine.

It is rare for adults to show new signs or symptoms if they were not diagnosed during childhood.

Early diagnosis is important to stop long-term damage.

Doctors can diagnose tethered cord syndrome based on your child’s symptoms and results from scans of the spinal cord.

• babies under three months will usually have an ultrasound
• children over three months will have an MRI scan to get a more detailed picture.

Most children with spina bifida will show some tethering on an MRI scan.

Your child will need regular check-ups and physiotherapy to track their movement and muscle strength. They may also need regular kidney ultrasounds to pick up any issues early and stop long-term damage.

Tethered cord syndrome is usually treated with surgery to release the spinal cord from the spinal column.

A brain and spine specialist, called a neurosurgeon, will decide whether surgery needs to be done early or later as your child develops, depending on:

• your child’s age and weight
• what the scans show
• your child’s signs and symptoms.

Surgery is done to stop further damage, but it cannot undo damage already done.

Risks of surgery are low but can include:

• infection
• bleeding
• damage to the spinal cord and worsening issues with muscle, bladder, bowel, and sexual function
• cerebrospinal fluid (CSF) leak.

After surgery, your child’s doctor will check their progress to make sure the cord does not reattach.

Most children only need one operation, but around 10-20% may need another later as they grow. 

Your child may see a physiotherapist or occupational therapist after surgery to support their recovery.