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Introduction

Tethered cord syndrome is commonly caused by development issues of the spine during pregnancy. It can also be caused by damage to the spine or the development of scar tissue after birth.

The spinal cord is a tube-like structure made of nerve tissue.  It connects the brain to the rest of the body and helps your child to move and feel things. It is surrounded by small bones called vertebra, forming the spinal column and protecting it. 

Tethered means tied or fixed.  In tethered cord syndrome, the spinal cord is connected to the lower part of the spinal column instead of being free to move. 

Tethered cord syndrome commonly happens when the spinal cord does not develop normally during pregnancy. It can also be caused by damage to the spine or the development of scar tissue after birth.

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 cord syndrome is a common condition. 

Many children do not develop symptoms of tethering.  

Symptoms may happen at any age in a child’s life but are likely to occur during rapid growth spurts, causing the spinal cord to stretch.  

Visible signs of a tethered cord include skin changes on the back such as: 

• a hairy tuft - small cluster of hair that sticks up or grows together in one spot
• sacral dimple â€� pit or hollow in the lower back located above the buttocks 
• lipoma - fatty mass under the skin
• unusual anatomy of the genitals or anus
• one leg or foot longer than the other.

If symptoms develop, they can include:

• back pain or pain that goes down into the legs
• difficulty walking
• numbness in the legs and back
• weakness in legs
• haemangiomas - discoloured patches of skin
• loss of bladder and bowel control
• progressive 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 of 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.

Early diagnosis can help prevent further permanent damage and can help ensure your child’s chance of full recovery. 

Tethered cord syndrome is usually treated with detethering surgery (freeing the spinal cord from the tissue attaching it to the spinal column). 

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.

Most children only need one detethering procedure. A small number of children (10-20%) need repeat cord detethering surgery. 

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.