Tethered cord syndrome

Introduction

Tethered cord syndrome is when the spinal cord has not developed properly and attaches to the wall of the spinal canal, rather than moving freely inside the canal.

When the spinal cord is attached to the wall of the spinal canal, it pulls tightly, creating tension and limiting movement. The spinal cord can stretch out and become damaged, stopping blood from flowing to the nerves. Tethered cause syndrome is commonly caused by problems with the development of the spine during pregnancy It can also be caused by damage to the spine or development of scar tissue after birth.

Signs of tethered cord syndrome can show up at different stages in life.

Some babies are born with visible signs including:

• a dimple, hairy tuft, discolouration of the skin, or fatty mass on the lower back
• unusual anatomy of the genitals or anus
• one leg or foot longer than the other.

Children will will commonly develop signs of tethered cord syndrome as they grow, including:

• difficulty walking
• severe leg or back pain
• numbness in the legs and back
• loss of muscle mass
• haemangiomas - discoloured patches of skin
• loss of bladder and bowel control
• scoliosis
• skin tags.

It is rare for adults to show symptoms if they have not already been diagnosed in childhood. This is because the spinal cord stretches during periods of rapid growth like through childhood and puberty.

Your child’s doctor will diagnose tethered cord syndrome based on any symptoms, and relevant scans to see inside the spinal cord.

For babies under 3 months, an ultrasound of the back is used.

For children over 3 months, an MRI scan is used.

Tethered cord syndrome is usually treated with surgery. Your child will see a neurosurgeon (brain and spine specialist) who will either perform the surgery before your child shows any symptoms or wait to see how your child develops.

This will depend on:

• how old your child is
• how much they weight
• what was found on the scans
• the type and severity of symptoms they are showing.

Surgery for tethered cord syndrome can stop further injury happening to the spinal nerves, but it is unable to fix damage that has already happened.

Risks of surgery are low, but can include:

• infection
• bleeding
• damage to the spinal cord, which can result in worsening muscle, bladder, bowel, and sexual function
• cerebrospinal fluid (CSF) leak.

After surgery, your child’s doctor will check their progress to make sure they are developing well and that the spinal cord is not at risk of reattaching.

Your child may also need to see a physiotherapist, or occupational therapist to regain function after surgery.

Tethered cord syndrome and spina bifida

Children with spina bifida have a high risk of tethered cord syndrome at birth. Spina bifida can cause fatty or thickened bands of tissue at the end of the spinal cord which can cause it to tether. In more severe forms of spina bifida, the spinal cord might be exposed and can attach to the skin.

Children with spina bifida can have surgery early in life to untether their spinal cord, but there is a risk of it reattaching after surgery if scar tissue forms.

If this happens, your child is at a higher risk of developing tethered cord syndrome as they grow, and will need regular monitoring by their doctor.