Tethered spinal cord syndrome, or tethered cord, is a neurological disorder caused by tissue attachments, or tethers, that connect to other parts of the back including the bone, muscle and connective tissues. This limits the movement of the spinal cord within the spinal column and causes the spinal cord to stretch because the bones, muscles and tissue grow faster than the spinal cord. Tethering may occur congenitally, meaning your child is born with it, or it can be acquired, meaning it happens after a baby is born, and is usually related to another condition or treatment of another condition.
What is tethered cord syndrome?
There are actually different types of tethered cord syndrome. The two most common are fatty filum terminale, or thickened filum, and lipomyelomeningocele
Filum terminale is the thin, flexible fiber that connects the bottom of the spinal cord to the bottom of the bones of the spine. But sometimes this fiber is thicker and less flexible than it should be and causes spinal cord tethering. When this occurs, the abnormally thick fiber stretches the spinal cord tightly, like a rubber band. The course of the disorder is progressive. This type of tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida.
Tethered spinal cord syndrome may go undiagnosed until adulthood, when pain, sensory and motor problems, and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time and may be exacerbated during sports or pregnancy, or may be due to narrowing of the spinal column (stenosis) with age.
Lipomyelomeningocele is a much more complex form of spinal cord tethering. Fatty and fibrous tissue attach to the spinal cord and through the bones and muscles surrounding the spine and connects all of these tissues to the skin. This type of tethering usually requires lifelong monitoring because it can come back, even after treatment.
Other more rare conditions may also develop, including:
- After spinal cord injury and scar tissue block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms
- Malformations due to previously repaired spina bifida
- Splitting of the spinal cord
- Cystic dilation of the bottom portion of the spinal cord
What causes it?
In most cases, tethering occurs while the baby is developing in the womb. During normal development, the spine separates from the surrounding bones, muscles, fatty tissue and skin, but in some cases this part of the development process doesn't occur, resulting in the spine remaining tethered to them.
Who gets it?
Girls are more likely to develop this condition than boys. In some cases, babies with other congenital conditions may also have tethered spine. However, in most cases, the cause is unknown.
What are the symptoms?
Sometimes babies are born with obvious symptoms such as a:
- Dimple over the sacrum or lumbar spine,
- Hemangioma birthmark which a red, raised birthmark
- Lipoma, which is a fatty tissue mass beneath the skin sometimes known as a “fatty tumor”
When symptoms appear at birth, surgery is usually recommended to prevent the development of symptoms in your child.
Sometimes babies don’t have any symptoms and may not develop them until later in childhood. Symptoms may include:
- Back and/or leg pain
- Urinary issues
- Deformities of the feet
- Scoliosis (curvature of the spine)
- Hairy patches on the low back
- Dimples on the low back
How is it diagnosed?
If your doctor suspects that your child has a tethered cord, a thorough medical history will be taken along with a physical exam. Depending on your child’s age the doctor will recommend either an ultrasound or an MRI of the low back. If your child has bowel or urinary issues, they may also see a gastroenterologist and/or a urologist who will examine your child as well, and will work as a part of your child’s treatment team.
How is it treated?
In children, early surgery is recommended to prevent further neurological deterioration. Regular follow-up is important: retethering may occur in some individuals during periods of rapid growth, especially when your child is between five to nine years of age. If surgery is not advisable, spinal cord nerve roots may be cut to relieve pain. In young adults, surgery to free (detether) the spinal cord can reduce the size and further development of cysts in the cord and may restore some function and ease other symptoms. Other treatment is symptomatic and supportive, such as physical and occupational therapy.
We are here to help.
If your child has been diagnosed, you probably have lots of questions. Call our offices at: 682-885-2500 to schedule an appointment, refer a patient or speak to our staff.