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
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Common cystic lymphatic malformation.
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Specialists
View all specialists →No specialists are currently listed for Common cystic lymphatic malformation.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Common cystic lymphatic malformation.
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Caregiver Resources
NORD Caregiver Resources
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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.