Tethered Cord Syndrome: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Tethered Cord Syndrome?
A neurosurgeon, a surgeon who operates on the brain, spine, and nerves, usually treats tethered cord syndrome. Physical and occupational therapists often help during follow-up care. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is tethered cord syndrome?
Tethered cord syndrome is a condition in which the spinal cord becomes stuck, or tethered, to nearby tissue. The spinal cord is a long bundle of nerve fibers that runs down the spine. Normally the spinal cord can move freely. When it is stuck, it can be stretched and damaged as a person grows. It is also called tethered spinal cord syndrome. It can happen at birth or later in life.
Symptoms
Tethered cord syndrome is often diagnosed in children. Symptoms in children can include:
- Sores, hairy patches, dimples, or tumors on the lower back.
- Changes in the shape of the feet and spine.
- Weakness and numbness in the legs.
- Pain in the lower back.
- A curve in the spine, called scoliosis.
- Ongoing bladder infections.
- Trouble controlling when to go to the bathroom.
- Pockets of fluid inside the spinal cord, called syringomyelia.
Back pain often gets worse with activity and gets better with rest. Some people do not know they have it until they are teenagers or adults. In adults, common symptoms include constant, often severe back and leg pain. Adults can also have trouble moving or feeling parts of the body. They can also have trouble controlling when to go to the bathroom. Symptoms can get worse with physical activity, pregnancy, or changes in the spine that happen as a person gets older. Without treatment, symptoms can get worse over time.
Causes and who gets it
It can happen after spinal cord injuries or tumors. Many people with spina bifida also have tethered cord syndrome. Spina bifida is a birth defect in which the spine does not close all the way. In many people, a thickened, stiff filum terminale is the cause. The filum terminale is a strand of tissue that bridges the tip of the spinal cord and the tailbone.
Other causes can include:
- A split spinal cord, called diastematomyelia.
- A lipoma, which is a fatty growth that is not cancer.
- A dermal sinus tract, a rare birth defect.
- A tumor.
- Infection or scar tissue on the spinal cord.
- Spine surgery.
It affects males and females in equal numbers.
How doctors diagnose it
Doctors usually diagnose it with imaging scans. A magnetic resonance imaging (MRI) scan can show where the spinal cord is tethered. An MRI can also find changes or tumors that may be causing symptoms. In children, a CT scan or an ultrasound may also be used. Nerve tests such as electromyography (EMG) and nerve conduction studies are sometimes used to check how well nerves work.
Treatment
Spine surgery to free the spinal cord is the main treatment. This surgery can help prevent symptoms from getting worse. It may also help a person move better, become stronger, control their bladder, and have less pain. In children, surgery to free the spinal cord is recommended to prevent or reverse worsening nerve symptoms. Doctors generally do the surgery when signs or symptoms of getting worse are seen. A person with only mild symptoms may be watched closely instead of having surgery. Some children may need more than one surgery. Sometimes the spinal cord cannot be freed directly, so a doctor can shorten the spine to reduce stretching of the spinal cord. After surgery, the spinal cord may become tethered again, and more surgery may be recommended. Risks of surgery include infection, bleeding, and damage to the spinal cord, which may lower muscle strength or bladder or bowel function. A child can usually return to normal activities within a few weeks after surgery.
When to see a doctor
Tell a doctor soon about any sore, hairy patch, or dimple on a child's lower back. Tell a doctor soon about leg weakness or numbness. Tell a doctor soon about trouble controlling when to go to the bathroom. In most cases, the tension on the spinal cord increases over time, but troubling symptoms often develop quickly over a few weeks. Without treatment, symptoms can get worse, so get medical care soon if any of these problems are new or getting worse.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either kind of doctor can listen to your symptoms, look at the lower back and legs, and refer you for an MRI. They can also help you keep up with follow-up visits with your neurosurgeon and therapists.
Common questions
Is surgery always needed for tethered cord syndrome?
No, not always. Surgery is the main treatment, but a person with only mild symptoms may be watched closely instead.
Can adults have tethered cord syndrome?
Yes, adults can have it. In adults, it can show up after an injury or other stress to the spine, such as tumor surgery or scar tissue.
Is tethered cord syndrome linked to spina bifida?
Yes, the two are linked. Many people with spina bifida also have tethered cord syndrome.
Can tethered cord syndrome come back after surgery?
Yes, it can. After surgery, the spinal cord may become tethered again, and more surgery may be recommended. Many children need only one untethering surgery, but 10-20% of children with this syndrome require repeated surgery.
Sources
- National Institute of Neurological Disorders and Stroke - Tethered Spinal Cord Syndrome
- National Organization for Rare Disorders - Tethered Cord Syndrome
- American Association of Neurological Surgeons - Tethered Spinal Cord Syndrome
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
