OBSOLETE: Retrocerebellar cyst

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ORPHA:269200
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What is OBSOLETE: Retrocerebellar cyst?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
Orphanet ↗NORD ↗

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 →

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.

Search ClinicalTrials.gov ↗Join the OBSOLETE: Retrocerebellar cyst community →

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.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers

Source: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months

🏨 Children's

Children's Hospital Colorado Rare Disease Program

Children's Hospital Colorado

📍 Aurora, CO

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Boston Children's Hospital Rare Disease Program

Boston Children's Hospital

📍 Boston, MA

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

🏨 Children's

Ann & Robert H. Lurie Children's Hospital Genetics

Lurie Children's Hospital

📍 Chicago, IL

👤 Boston Children's Hospital Rare Disease Program

🏥 NORD

Cincinnati Children's Hospital Medical Center

Cincinnati Children's

📍 Cincinnati, OH

👤 Boston Children's Hospital Rare Disease Program

🏨 Children's

Nationwide Children's Hospital Rare Disease Center

Nationwide Children's Hospital

📍 Columbus, OH

👤 Boston Children's Hospital Rare Disease Program

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to OBSOLETE: Retrocerebellar cyst.

Search all travel grants →NORD Financial Assistance ↗

Community

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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.

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Caregiver Resources

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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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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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