What is tethered spinal cord syndrome?
Tethered spinal cord syndrome (TSCS) is a disorder of the nervous system caused by tissue that attaches itself to the spinal cord and limits the movement of the spinal cord.
The tissue attachments may be present from birth at the base of the spinal cord (known as the conus medullaris), or they may develop near the site of an injury to the spinal cord. They can cause the spinal cord to stretch abnormally.
The course of the disorder is progressive, which means it gets worse as time goes on.
In children, symptoms may include:
- Lesions, hairy patches, dimples, or fatty tumors on the lower back
- Foot and spinal deformities
- Weakness in the legs
- Pain in the lower back
- Loss of bowel and bladder control
TSCS in children appears to be caused by incorrect growth of the neural tube while the fetus is developing, and it's related to the disorder called spina bifida.
TSCS may go undiagnosed until adulthood. Symptoms then can include:
- Sensory and motor problems
- Loss of bowel and bladder control
These delayed symptoms are related to how much strain is placed on the spinal cord over time. The strain can be made worse during sports or pregnancy, or it may be due to the spinal column get narrower (a process known as stenosis) as a person gets older.
Tethering can also develop after a spinal cord injury. Scar tissue from the injury can block the flow of fluids around the spinal cord. Fluid pressure can then cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, numbness, pain, or other symptoms such as increased heart rate, blood pressure, or problems with breathing.
MRI imaging is often used to evaluate people with symptoms of TSCS. Doctors can use MRI imaging to diagnose where the tethering is located, whether the base of a patient's spinal cord (the conus medullaris) is lower than normal, or if a tumor or a fatty mass (known as a lipoma) is causing the symptoms of TSCS.
In children with TSCS, early surgery is usually recommended to prevent further neurological deterioration. If surgery is not advisable, spinal cord nerve roots may be cut to relieve pain.
In adults, surgery to free (detether) the spinal cord can reduce the size and further development of cysts in the cord. Surgery may also restore some function or alleviate other symptoms.
For both children and adults, other forms of treatment can help relieve the symptoms of TSCS.
How can I or my loved one help improve care for people with tethered spinal cord syndrome?
Consider participating in a clinical trial so clinicians and scientists can learn more about TSCS and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with TSCS at Clinicaltrials.gov.
Where can I find more information about tethered spinal cord syndrome?
The following organizations may provide information about TSCS:
American Syringomyelia & Chiari Alliance Project (ASAP)
Phone: 903-236-7079 or 800-272-7282
Spina Bifida Association
Phone: 202-944-3285 or 800-621-3141