What is OBSOLETE: Retrocerebellar cyst?
A retrocerebellar cyst is a fluid-filled sac (cyst) located behind the cerebellum, which is the part of the brain at the back of the skull responsible for balance and coordination. This term has been marked as 'obsolete' in medical classification systems because it is now understood to be a broad descriptive finding rather than a single specific disease. Retrocerebellar cysts can represent several different conditions, including Dandy-Walker malformation, mega cisterna magna, or Blake's pouch cyst, each of which has its own distinct features and outcomes. Many retrocerebellar cysts are discovered incidentally on brain imaging (such as MRI or ultrasound) and may cause no symptoms at all. When symptoms do occur, they can include headaches, problems with balance and coordination, developmental delays in children, increased head size in infants, and sometimes increased pressure inside the skull (hydrocephalus). The severity depends on the size of the cyst, whether it blocks the normal flow of cerebrospinal fluid, and the specific underlying condition. Treatment varies widely depending on the cause and whether symptoms are present. Many people with small, asymptomatic cysts require only monitoring with periodic imaging. If the cyst causes hydrocephalus or significant symptoms, surgical options may include placing a shunt to drain excess fluid or performing an endoscopic procedure to open the cyst and restore normal fluid flow. Because this term encompasses multiple conditions, patients should work with their medical team to determine the specific diagnosis and appropriate management plan.
Key symptoms:
HeadachesProblems with balance and coordinationEnlarged head size in infantsDevelopmental delaysNausea and vomitingIrritability in infantsVision problemsDifficulty walkingBulging soft spot on an infant's headIncreased pressure inside the skullSeizures in some casesLearning difficulties
- 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
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for OBSOLETE: Retrocerebellar cyst.
View clinical trials →Clinical Trials
View all trials with filters →Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest
No actively recruiting trials found for OBSOLETE: Retrocerebellar cyst at this time.
New trials open frequently. Follow this disease to get notified.
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: Retrocerebellar cyst.
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: Retrocerebellar cyst.
Community
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Start the conversation →Latest news about OBSOLETE: Retrocerebellar cyst
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: Retrocerebellar cyst.
Follow this condition to be notified when news becomes available.
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.What specific type of retrocerebellar cyst does my child (or do I) have?,Is the cyst causing any blockage of fluid flow in the brain?,Does this cyst need treatment now, or can we monitor it with regular imaging?,What symptoms should I watch for that would require urgent medical attention?,Should genetic testing be done to look for an underlying cause?,How often will follow-up MRI scans be needed?,Are there any activity restrictions I should be aware of?
Common questions about OBSOLETE: Retrocerebellar cyst
What is OBSOLETE: Retrocerebellar cyst?
A retrocerebellar cyst is a fluid-filled sac (cyst) located behind the cerebellum, which is the part of the brain at the back of the skull responsible for balance and coordination. This term has been marked as 'obsolete' in medical classification systems because it is now understood to be a broad descriptive finding rather than a single specific disease. Retrocerebellar cysts can represent several different conditions, including Dandy-Walker malformation, mega cisterna magna, or Blake's pouch cyst, each of which has its own distinct features and outcomes. Many retrocerebellar cysts are discov
Frequently asked questions about OBSOLETE: Retrocerebellar cyst
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is OBSOLETE: Retrocerebellar cyst?
OBSOLETE: Retrocerebellar cyst is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:269200). It is typically inherited as variable. Age of onset is generally variable. For verified primary sources, see the UniteRare OBSOLETE: Retrocerebellar cyst page.
How is OBSOLETE: Retrocerebellar cyst inherited?
OBSOLETE: Retrocerebellar cyst 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: Retrocerebellar cyst?
Approved treatments for OBSOLETE: Retrocerebellar cyst 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 for OBSOLETE: Retrocerebellar cyst?
Active clinical trials for OBSOLETE: Retrocerebellar cyst are tracked daily from ClinicalTrials.gov. Trial availability changes frequently; check the UniteRare trial listings for the current count and recruitment status. Sponsors of rare-disease research often welcome inquiries even when a trial is not actively recruiting at a given moment.
How do I find a specialist for OBSOLETE: Retrocerebellar cyst?
Verified OBSOLETE: Retrocerebellar cyst 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: Retrocerebellar cyst page for complete clinical details, sources, and verified-specialist listings.
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