Living with Syringomyelia
A condition in which a fluid-filled cyst forms inside the spinal cord, causing pain, weakness, and loss of temperature sensation.
Understanding Syringomyelia
The cyst grows and lengthens over time and damages the center of the spinal cord. This can cause pain, weakness, stiffness in the back, shoulders, arms, or legs, headaches, and loss of sense of temperature, especially in the hands. It is often related to a brain difference called Chiari I malformation. It can also follow injury, meningitis, bleeding, or a tumor. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Pain
- Weakness
- Stiffness in the back, shoulders, arms, or legs
- Headaches
- Loss of temperature sensation, especially in the hands
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.
- 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)
- 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
It is often related to a Chiari I malformation. It can also be a complication of trauma, meningitis, arachnoiditis, bleeding, or a tumor. Some cases run in families, though this is rare.
Also known as: fluid-filled cyst in spinal cord; hydromyelia; myelosyringosis; syringomyelia-anesthesia syndrome; syrinx
Patient organizations
- Bobby Jones Chiari & Syringomyelia FoundationSyringomyelia · United States
- American Syringomyelia & Chiari Alliance ProjectSyringomyelia · United States
- Christopher and Dana Reeve FoundationSyringomyelia · United States
- Conquer ChiariSyringomyelia · United States
You are more than your diagnosis
Perspectives from people navigating life with Syringomyelia.
Explore research for Syringomyelia
Explore actively recruiting Syringomyelia studies with HealthSpark.
Find actively recruiting studies for Syringomyelia with HealthSpark. Share your city to explore research near you.
- 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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