Living with Primary syringomyelia
A rare spinal cord condition in which a fluid-filled cavity forms in the spinal cord, causing pain and changes in feeling and movement.
Understanding Primary syringomyelia
It can be of unknown cause or familial. In people with symptoms, there can be nerve pain, and changes in feeling and movement. A typical sign is a cape-like loss of pain and temperature sensation along the torso and arms. Another is much more movement impairment in the arms than the legs.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Nerve pain
- Loss of pain and temperature feeling over the torso and arms
- Arm weakness
- Changes in movement and feeling
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 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
- 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 is either of unknown cause or seen as a familial malformation. It doesn't name a gene.
Also known as: congenital syringomyelia
Patient organizations
- Bobby Jones Chiari & Syringomyelia FoundationPrimary syringomyelia · United States
- American Syringomyelia & Chiari Alliance ProjectPrimary syringomyelia · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary syringomyelia.
Explore research for Primary syringomyelia
Explore actively recruiting Primary syringomyelia studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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