Venous malformations factsheet

Introduction

Venous malformations (VMs) happen when vessels in the body, like veins, do not develop properly. These vessels become swollen, tangled, and larger than normal. 

VMs can form anywhere in the body, close to the skin or deeper inside. They can be:

  • small, affecting only one area
  • large, spreading across multiple areas.

VMs grow as your child develops during pregnancy and will continue to grow after birth. VMs can be complex and linked to other health issues, so it’s important to have them treated.

 Signs and symptoms

VMs can look different depending on where and how deep they are in the body.

If a VM is deep in the body, like in the muscles, it may not be noticed until it causes pain or swelling.

Common symptoms include:

  • maroon, purple, or bluish spots on the skin
  • swelling or bulging without a colour change
  • pain
  • bleeding.

Other possible symptoms:

  • heaviness, numbness, tingling, or aching in the affected area
  • changes in the growth of the affected limb
  • blood clots due to slow blood flow through the veins.

VMs can become more noticeable:

  • after an injury or partial removal
  • as your child grows
  • as the veins stretch
  • during or after physical activity
  • when crying
  • with temperature changes.

Diagnosis

Doctors can diagnose a VM using:

  • ultrasound – scans that show the size, flexibility, and structure of the veins, blood flow speed and possible clots.
  • Magnetic Resonance Imaging (MRI) – a scan that gives detailed images of the malformation, especially for complex cases or sensitive areas like the face and neck
  • doppler ultrasound – a scan that shows how blood moves through the affected veins compared to normal veins, particularly in the arms or legs.
  • blood tests – to check for clotting problems or other complications.

Treatment

Treatment depends on your child’s needs and is usually managed by doctors, nurses, and other specialists.

VMs cannot always be completely removed, so treatment focuses on managing symptoms and preventing complications. This helps your child stay active and healthy.

Common treatment options include:

  • observation – if the VM is small and not causing problems, doctors may monitor it over time
  • compression and physiotherapy – specially made, tight-fitting clothing worn around the affected body part can reduce swelling and pain. Physiotherapy helps improve movement and strength
  • sclerotherapy – a treatment where medicine is injected into the abnormal veins to shrink or seal them. A compression garment may be needed afterwards to improve results
  • surgery – in some cases, surgery may be needed to remove or reduce the VM. However, surgery carries risks like scarring and damage to nearby tissues, so it is only considered if other treatments don’t work
  • medication – some medicines can help manage symptoms
  • biopsy – a small tissue sample may be tested before starting certain treatments.

 Management

Long-Term Care

VMs are a lifelong condition. Your child will need regular check-ups so the treatment team can monitor the malformation and adjust the treatment plan if needed.

Support for families

Managing the long-term treatment of VMs can be challenging for families. Speak to your child’s treatment team about support, such as:

  • seeing a social worker to help with stress or anxiety
  • getting help with travel and accommodation related to appointments.