Blocked large vein (superior vena cava syndrome)

Overview

Swelling of the face, neck, and arms that gets worse when lying down or bending is typical.

Lung cancer and lymphoma are common causes.

Symptoms

Common signs:

• Swollen face and arms
• Swollen or puffy eyelid or eye

Less common

• Shortness of breath
• Cough
• Hoarseness

Look up a symptom: Getting winded easily with activity or stairs · Headache

When to get medical care

Causes

Tumor, clot.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• People with lung cancer or lymphoma: Most common cause
• People with catheters or pacemaker wires: Higher risk

Possible complications

• Brain swelling: Rare, from backed-up blood

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• CT:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Sleep with your head raised
• Avoid tight collars

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a vascular specialist (blood vessel doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• People with lung cancer or lymphoma: Higher risk.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Treatment of the cause often relieves it.

Treatment helps most.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Do I need a stent?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Blocked large vein (superior vena cava syndrome)