What is OBSOLETE: Primary syringomyelia/hydromyelia?
Primary syringomyelia (also called hydromyelia) is a condition in which fluid-filled cavities, called syrinxes, form within the spinal cord. This entry in Orphanet has been marked as 'OBSOLETE,' meaning it has been retired or reclassified, but the underlying condition is still recognized in medicine. In syringomyelia, the abnormal fluid collection inside the spinal cord gradually damages nerve fibers, leading to a range of neurological problems. Symptoms typically develop slowly and may include pain, weakness, and stiffness in the back, shoulders, and limbs. Many people notice a loss of the ability to feel pain or temperature changes, especially in the hands and arms, which can lead to unnoticed burns or injuries. Over time, muscle wasting and difficulty with coordination may occur. In some cases, the condition is associated with a Chiari malformation, where part of the brain extends into the spinal canal, or it may develop after spinal cord injury, infection, or tumor. When no clear underlying cause is found, it is referred to as 'primary' or 'idiopathic' syringomyelia. Treatment depends on the severity and progression of symptoms and may include surgical options such as draining the syrinx or addressing an underlying Chiari malformation. Physical therapy and pain management are also important parts of care. Because this Orphanet entry is obsolete, patients should look for updated classifications and consult with a neurologist or neurosurgeon for the most current guidance.
Key symptoms:
Pain in the neck, shoulders, or backLoss of ability to feel pain or temperature in the hands and armsMuscle weakness in the arms and handsMuscle wasting or shrinking, especially in the handsStiffness in the legsDifficulty walking or problems with balanceNumbness or tingling in the arms or legsHeadaches, especially at the back of the headChronic pain that may be burning or achingBowel or bladder problemsScoliosis (curvature of the spine)Sexual dysfunctionExcessive sweating or changes in sweating patterns
- Inheritance
- Variable
- Can be inherited in different ways depending on the underlying gene
- Age of Onset
- Variable
- Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
3 eventsXuanwu Hospital, Beijing — PHASE1
Assistance Publique - Hôpitaux de Paris
National Institute of Neurological Disorders and Stroke (NINDS)
Data is compiled from FDA regulatory filings and ClinicalTrials.gov, then processed through automated extraction; event classifications and dates may occasionally be misclassified. Verify against the linked FDA filing or trial record before clinical decisions. Updated periodically.
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for OBSOLETE: Primary syringomyelia/hydromyelia.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest
Specialists
View all specialists →Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)
No specialists are currently listed for OBSOLETE: Primary syringomyelia/hydromyelia.
Treatment Centers
8 centersSource: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months
Children's Hospital Colorado Rare Disease Program ↗
Children's Hospital Colorado
📍 Aurora, CO
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDBoston Children's Hospital Rare Disease Program ↗
Boston Children's Hospital
📍 Boston, MA
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
🏨 Children'sAnn & Robert H. Lurie Children's Hospital Genetics ↗
Lurie Children's Hospital
📍 Chicago, IL
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDCincinnati Children's Hospital Medical Center ↗
Cincinnati Children's
📍 Cincinnati, OH
👤 Boston Children's Hospital Rare Disease Program
🏨 Children'sNationwide Children's Hospital Rare Disease Center ↗
Nationwide Children's Hospital
📍 Columbus, OH
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
Travel Grants
No travel grants are currently matched to OBSOLETE: Primary syringomyelia/hydromyelia.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Primary syringomyelia/hydromyelia.
Start the conversation →Latest news about OBSOLETE: Primary syringomyelia/hydromyelia
Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC
No recent news articles for OBSOLETE: Primary syringomyelia/hydromyelia.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How large is the syrinx, and is it growing?,Is there an underlying cause such as a Chiari malformation?,Do I need surgery, or can we monitor with regular MRIs?,What symptoms should prompt me to seek emergency care?,What can I do to manage chronic pain effectively?,Are there activities I should avoid to prevent further injury?,How often should I have follow-up imaging and exams?
Common questions about OBSOLETE: Primary syringomyelia/hydromyelia
What is OBSOLETE: Primary syringomyelia/hydromyelia?
Primary syringomyelia (also called hydromyelia) is a condition in which fluid-filled cavities, called syrinxes, form within the spinal cord. This entry in Orphanet has been marked as 'OBSOLETE,' meaning it has been retired or reclassified, but the underlying condition is still recognized in medicine. In syringomyelia, the abnormal fluid collection inside the spinal cord gradually damages nerve fibers, leading to a range of neurological problems. Symptoms typically develop slowly and may include pain, weakness, and stiffness in the back, shoulders, and limbs. Many people notice a loss of the ab
Are there clinical trials for OBSOLETE: Primary syringomyelia/hydromyelia?
Yes — 2 recruiting clinical trials are currently listed for OBSOLETE: Primary syringomyelia/hydromyelia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Frequently asked questions about OBSOLETE: Primary syringomyelia/hydromyelia
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is OBSOLETE: Primary syringomyelia/hydromyelia?
OBSOLETE: Primary syringomyelia/hydromyelia is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:268871). It is typically inherited as variable. Age of onset is generally variable. For verified primary sources, see the UniteRare OBSOLETE: Primary syringomyelia/hydromyelia page.
How is OBSOLETE: Primary syringomyelia/hydromyelia inherited?
OBSOLETE: Primary syringomyelia/hydromyelia follows variable inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.
Are there FDA-approved treatments for OBSOLETE: Primary syringomyelia/hydromyelia?
Approved treatments for OBSOLETE: Primary syringomyelia/hydromyelia are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.
Are there clinical trials recruiting for OBSOLETE: Primary syringomyelia/hydromyelia?
UniteRare currently lists 2 clinical trials relevant to OBSOLETE: Primary syringomyelia/hydromyelia sourced from ClinicalTrials.gov. Each trial entry includes recruitment status, eligibility criteria summary, principal-investigator information, and study locations. Patients should discuss eligibility with their healthcare provider before enrolling.
How do I find a specialist for OBSOLETE: Primary syringomyelia/hydromyelia?
Verified OBSOLETE: Primary syringomyelia/hydromyelia specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.
See full OBSOLETE: Primary syringomyelia/hydromyelia page for complete clinical details, sources, and verified-specialist listings.
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