A tethered spinal cord cannot move freely in the spinal canal because it is attached to tissues around the spine. The condition is often seen in infants, leading to pain and nerve damage that worsen over time.

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A tethered spinal cord is rare. While it can occur in adults, it’s most common in infants, affecting approximately 0.25% of every 1,000 babies.

It’s essential that babies with a tethered spinal cord be identified so that their nerve development is not impacted and painful symptoms do not continue to get worse throughout their lives.

In addition to babies, adults can develop a tethered spinal cord and experience painful symptoms.

A tethered spinal cord means an individual’s spinal cord is attached to the tissues around the spine and is unable to move freely. A tethered spinal cord may be identified at or shortly after birth or present at birth but identified later in life. Rarely, a tethered cord may develop due to an injury to the spinal cord.

People with tethered spinal cord are diagnosed with tethered spinal cord syndrome, a disorder of the nervous system.

Symptoms of a tethered spinal cord in children can include:

  • lower back pain
  • scoliosis
  • leg weakness
  • changes in the feet and spine
  • loss of bowel and bladder control
  • sensory and motor problems
  • conditions of the lower back, such as:
    • sores
    • hairy patches
    • skin discoloration
    • fatty tumors
    • dimples

Diagnosing a tethered spinal cord often begins with a physical exam. If signs of a tethered spinal cord are present, a doctor will request an ultrasound, MRI, or CT scan. These medical images can confirm a tethered spinal cord.

Treatment for a tethered spinal cord frequently requires surgery to release the spinal cord from where it is tethered. The specifics of this surgery will vary depending on the symptoms present and how the spinal cord is attached.

In some cases, if there are no symptoms related to a tethered spinal cord, the healthcare team may prefer to wait and see what happens before recommending surgery.

Medications cannot be used to cure a tethered spinal cord, but they can help provide relief from painful symptoms. Doctors may offer medications to help with pain or to relax muscles that are having spasms.

A tethered spinal cord can prevent the spine from stretching fully and may result in permanent nerve damage. If surgery is not performed until later in life, symptoms like muscle weakness or loss of motor control may never entirely go away.

Complications of spinal surgery may include:

  • infections
  • cerebrospinal fluid leaks
  • spinal cord and nerve injuries

It’s essential to continue to monitor people who have had surgery to release a tethered spinal cord. Their spinal cord could re-tether, and another surgery may be necessary.

People may be at a greater risk for a tethered spinal cord if they have:

Having a tethered spinal cord in young children may be linked to incorrect growth of the neural tube while developing in the womb. People can also develop a tethered spinal cord at any point due to scar tissue, an infection, or a tumor.

Tethered spinal cord syndrome is a progressive disease, so left untreated, symptoms typically worsen.

The outlook is generally positive after surgery, but results depend on various factors, including:

  • whether you are a child or an adult
  • symptoms you are experiencing
  • how your spinal cord is tethered
  • if you have other conditions like spina bifida or tumors

Is it possible to prevent a tethered spinal cord?

There is no way currently to prevent a tethered spinal cord, but you can help prevent symptoms from worsening by getting treatment right away.

Will I need more than one surgery to treat my tethered spinal cord?

Many people need only one surgery to treat their tethered spinal cord. However, children still undergoing growth spurts may need a second surgery to rerelease the spinal cord. Ten to 20% of children will need a second surgery.

Is a tethered spinal cord the same as spina bifida?

Many people with spina bifida will have a tethered spinal cord, but the two conditions are not the same. People can develop a tethered spinal cord without having spina bifida. Approximately 20-50% of people with spina bifida irregularities that require repair after birth will need surgery to release their spinal cord.

A tethered spinal cord is when the spinal cord attaches to tissues around the spine. People are at a greater risk of this if they have spina bifida or spinal trauma.

Symptoms typically worsen if a tethered spinal cord is left untreated. Surgery can free the spinal cord, relieving pain. If you believe you have a tethered spinal cord, it’s vital to let your doctor know so that a physical exam and medical scans can be performed.