Common cystic lymphatic malformation

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:458833
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Common cystic lymphatic malformation, also known as cystic hygroma or macrocystic lymphatic malformation, is a condition where abnormal collections of fluid-filled sacs (cysts) develop in the lymphatic system. The lymphatic system is a network of vessels and tissues that helps your body fight infection and drain excess fluid. In this condition, the lymphatic vessels do not form properly, leading to large cysts that are typically greater than 2 centimeters in size. These cysts most often appear in the neck and head area but can also occur in the armpit, chest, groin, or other parts of the body. This condition is usually detected before birth on prenatal ultrasound or noticed at birth or during early infancy as a soft, painless swelling. While the cysts themselves are not cancerous, they can grow over time and press on nearby structures such as the airway, blood vessels, or nerves, which can cause breathing difficulties, swallowing problems, or other complications. Infections within the cysts can also occur and cause sudden painful swelling. Treatment depends on the size, location, and symptoms of the malformation. Options include sclerotherapy (injecting a substance into the cysts to shrink them), surgical removal, or a combination of both. Some small cysts may be monitored without treatment if they are not causing problems. While treatment can significantly reduce the size of the malformation and improve symptoms, complete cure can be challenging because these malformations sometimes recur. A team of specialists typically works together to manage this condition.

Key symptoms:

Soft, painless swelling in the neck, armpit, or other body areasLarge fluid-filled cysts visible under the skinBreathing difficulties if cysts press on the airwayDifficulty swallowing or feedingSudden increase in swelling during infections or illnessSkin changes or bluish discoloration over the cystRecurrent infections in the affected areaSpeech difficulties if the tongue or mouth is involvedFacial asymmetry if located in the head or neckPain or tenderness during infection or bleeding into the cystObstructive sleep apneaDrooling or difficulty managing saliva

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Common cystic lymphatic malformation.

View clinical trials →

No actively recruiting trials found for Common cystic lymphatic malformation at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Common cystic lymphatic malformation community →

No specialists are currently listed for Common cystic lymphatic malformation.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Common cystic lymphatic malformation.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Common cystic lymphatic malformationForum →

No community posts yet. Be the first to share your experience with Common cystic lymphatic malformation.

Start the conversation →

Latest news about Common cystic lymphatic malformation

No recent news articles for Common cystic lymphatic malformation.

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 is the exact size and location of my child's lymphatic malformation, and is it affecting any important structures?,What treatment options are best for my child's specific situation, and what are the risks and benefits of each?,How likely is the malformation to come back after treatment?,Should we have genetic testing done to check for any associated conditions?,What warning signs should I watch for that would require emergency care?,Will my child need long-term follow-up, and how often should we schedule check-ups?,Are there any clinical trials or newer treatments that might be appropriate for my child?

Common questions about Common cystic lymphatic malformation

What is Common cystic lymphatic malformation?

Common cystic lymphatic malformation, also known as cystic hygroma or macrocystic lymphatic malformation, is a condition where abnormal collections of fluid-filled sacs (cysts) develop in the lymphatic system. The lymphatic system is a network of vessels and tissues that helps your body fight infection and drain excess fluid. In this condition, the lymphatic vessels do not form properly, leading to large cysts that are typically greater than 2 centimeters in size. These cysts most often appear in the neck and head area but can also occur in the armpit, chest, groin, or other parts of the body.

How is Common cystic lymphatic malformation inherited?

Common cystic lymphatic malformation follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Common cystic lymphatic malformation typically begin?

Typical onset of Common cystic lymphatic malformation is neonatal. Age of onset can vary across affected individuals.