Tethered Spinal Cord

Tethered spinal cord, sometimes called tethered spinal cord syndrome, occurs when the spinal cord becomes attached (or tethered) to tissues surrounding it. When tethered spinal cord occurs, the spine isn’t free to move normally. As a result, the spinal cord is pulled or stretched, which interferes with its blood supply and may cause nerve damage.

Tethered spinal cord is often linked to spina bifida. More than 40 percent of children who have spina bifida will need surgery to untether the spinal cord during their lifetimes. In most of those cases, the spinal cord is tethered to the tough membrane called the dura, which covers the spinal cord.

Other causes of tethered cord syndrome include:

• Dermal sinus tract (a rare congenital disability)
• Diastematomyelia (a split spinal cord)
• Lipoma (a benign, fatty growth)
• Previously treated tumor
• Thickened/tight filum terminale (a delicate, threadlike tissue near the tailbone)
• Scoliosis (spinal curvature)
• A history of spine trauma or spine injury
• Previous spinal cord surgery

Sometimes children who have tethered spinal cord don’t develop symptoms and therefore don’t require treatment.

The first signs of tethered spinal cord might be visible on the lower back. Visible symptoms might include:

• A spot of discolored skin.
• A wound or lesion.
• A patch of hair.
• A deep dimple (also known as a sacral dimple).
• A fatty tumor.

The most common tethered cord symptoms are:

• Trouble walking or standing.
• Leg or back pain.
• Changes in bladder and bowel function.
• Increased spasms or stiffness (also known as spasticity).
• Scoliosis that gets worse over time.

If you think your child has a tethered spinal cord, the following tests might help diagnose the condition and its severity.

• CT scan.
• MRI.
• Ultrasound (usually used only for infants).
• Urological testing.
• X-rays.

A neurosurgeon reviews all the test results and your child's signs and symptoms before deciding if tethered spinal cord surgery would be beneficial for your child. Although medicines can't treat tethered spinal cord itself, they sometimes help to ease pain or reduce muscle stiffness (spasticity) linked to the condition. 

Tethered spinal cord surgery, also called tethered spinal cord release, is a fairly routine surgical procedure used to treat a tethered cord. There are two types of tethered spinal cord release surgery. In the simplest and most common form, a neurosurgeon makes a small opening in the back of the spine, below the end of the spinal cord, to cut the filum terminale, which is a band of tissue at the end of the spinal cord. This is a short procedure with very low risks.

The more complex form of surgery is for patients who have previously had surgery to repair open spina bifida or other complex malformations, such as a lipoma or a split cord malformation. During the procedure, a neurosurgeon opens up the back and the spinal column to gently cut away the spinal cord from the scarred tissue it’s attached to, which allows the spinal cord to move freely. This is done using microsurgical techniques, but carries a slightly higher risk of complications.

If a child has tethered cord syndrome and doesn’t have the operation, their spinal cord could stretch even further, leading to more damage. Although tethered spinal cord surgery prevents symptoms from getting worse, it may not reverse the damage that has already happened. In some cases, children who have the procedure experience improvement of pain, weakness, numbness or tingling after surgery. However, the amount of lost muscle and bladder function that they recover varies for each individual.

During tethered spinal cord surgery,

1. The neurosurgeon makes a cut (incision) on your child's back
2. The neurosurgeon cuts (releases) the source of the tethering, such as the threadlike filum at the end of the spinal cord, lipoma, or scar tissue. Sometimes the neurosurgeon removes a small portion of the bony vertebrae (laminae) for better exposure, or to decompress the spinal cord.
3. The neurosurgeon opens the thin layer of matter (dura) covering the spinal cord and gently cuts the spinal cord away from the scarred attachments to the surrounding tissues.

Tethered spinal cord surgery typically lasts two to four hours.

Although each child’s experience is different, a typical hospital stay after a tethered cord surgery lasts four to seven days. If your child has the procedure, they will likely be hospitalized in the Neurosciences Unit. Here, they rest flat in bed for 24 to 72 hours after surgery. The duration of bed rest depends on what caused the tethering, the age of your child, and other factors. A pediatric neurosurgeon decides how long your child needs to stay in bed. A neurosurgery team member visits your child every day during hospitalization, making recommendations and checking the incision.

Every child heals differently, and outcomes depend on the neurologic condition of your child before surgery. Kids usually return to normal activities within a few weeks. Your child will likely have an appointment with a neurosurgery provider two weeks after discharge from the hospital, to check the incision. Six weeks after surgery, a neurosurgeon or advance practice provider will evaluate your child’s progress. The pediatric neurosurgery team generally sees kids regularly throughout childhood and adolescence to watch for any return of tethered cord symptoms.

If your child has tethered spinal cord, you’ll find care and support in a family-centered environment at Gillette Children’s. Our leading pediatric neurologists and neurosurgeons will work closely with you to create a custom treatment plan for surgical and rehabilitative care.

It’s possible your child will continue to experience pain, weakness, difficulty walking or other medical issues after surgery to untether the spine. Our multidisciplinary team of specialists offers services to make sure they have everything they need to feel comfortable, confident and cared for.

Your child or family member might receive care from specialists in one of the following areas:

• Pediatric neurology
• Neurosurgery
• Pediatric Rehabilitation Medicine
• Gastroenterology
• Occupational therapy
• Physical therapy
• Radiology and imaging
• Rehabilitation therapies
• Urology