Living with Primary tethered cord syndrome
A neurological condition in which the spinal cord is held in place and can't move freely, causing leg weakness, back pain and bladder problems.
Understanding Primary tethered cord syndrome
Severity varies. It may involve foot and spine differences, leg weakness, loss of feeling in the legs, lower back pain, scoliosis and bladder control problems. Babies and children may have a tuft of hair, a dimple, skin color change or a fatty lump on the lower back. It can begin at birth or in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Weakness in the legs
- Loss of feeling in the lower limbs
- Lower back pain
- Scoliosis
- Loss of bladder control
- Hair tuft, dimple or fatty lump on the lower back
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Bobby Jones Chiari & Syringomyelia Foundation and Spina Bifida Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Bobby Jones Chiari & Syringomyelia Foundation, Spina Bifida Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Bobby Jones Chiari & Syringomyelia Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says it occurs when tissue attachments limit the spinal cord's movement. It may result from improper growth of the neural tube before birth, which is closely linked to spina bifida. Other causes include spinal narrowing with age, spinal cord injury, tumors and infection.
Also known as: primary tethered spinal cord syndrome; tethered cord syndrome
Patient organizations
- Bobby Jones Chiari & Syringomyelia FoundationPrimary tethered cord syndrome · United States
- Spina Bifida AssociationPrimary tethered cord syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary tethered cord syndrome.
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