Overview
Venous thoracic outlet syndrome (also called Paget-Schroetter syndrome or effort thrombosis) is a condition where the large vein that carries blood from your arm back to your heart (the subclavian vein) becomes compressed or blocked in the narrow space between your collarbone and first rib. This area is called the thoracic outlet. When the vein is squeezed in this space, blood flow slows down and a blood clot can form. This condition most often affects young, otherwise healthy, and physically active people, particularly those who do repetitive overhead arm movements such as swimmers, baseball pitchers, weightlifters, or manual laborers. The main symptoms include sudden swelling of the arm, a feeling of heaviness or aching, bluish discoloration of the skin, and visible enlarged veins on the arm, shoulder, or chest. The condition typically affects one arm, usually the dominant one. Some people may notice their symptoms get worse with activity and improve with rest. Treatment usually involves a combination of approaches. Initially, blood-thinning medications (anticoagulants) are given to treat and prevent further clotting. Many patients also receive clot-dissolving therapy (thrombolysis) to break up the existing clot. In many cases, surgery is recommended to remove the first rib and relieve the compression on the vein. This procedure is called first rib resection. Without proper treatment, the condition can lead to long-term arm swelling, pain, and disability. With timely and appropriate treatment, most patients recover well and can return to their normal activities.
Also known as:
Key symptoms:
Sudden swelling of the armArm heaviness or achingBluish or purplish discoloration of the arm or handVisible enlarged veins on the arm, shoulder, or chestArm pain that worsens with activityFeeling of tightness in the armWarmth in the affected armNumbness or tingling in the hand or fingersWeakness in the affected armFatigue in the arm with useSwelling of the hand or fingers
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Venous thoracic outlet syndrome.
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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
Financial Resources
1 resourcesCeprotin
Baxalta US, Inc.
Ceprotin — Contact Baxalta US, Inc.
Travel Grants
No travel grants are currently matched to Venous thoracic outlet syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.How severe is the blood clot, and has it caused any permanent damage to my vein?,Do I need clot-dissolving therapy, surgery, or both?,How long will I need to take blood-thinning medication?,When can I return to work, sports, or normal daily activities?,What are the risks of the clot coming back after treatment?,Should I avoid certain activities or exercises in the future?,Are there any signs or symptoms I should watch for that would require emergency care?
Common questions about Venous thoracic outlet syndrome
What is Venous thoracic outlet syndrome?
Venous thoracic outlet syndrome (also called Paget-Schroetter syndrome or effort thrombosis) is a condition where the large vein that carries blood from your arm back to your heart (the subclavian vein) becomes compressed or blocked in the narrow space between your collarbone and first rib. This area is called the thoracic outlet. When the vein is squeezed in this space, blood flow slows down and a blood clot can form. This condition most often affects young, otherwise healthy, and physically active people, particularly those who do repetitive overhead arm movements such as swimmers, baseball
How is Venous thoracic outlet syndrome inherited?
Venous thoracic outlet syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Venous thoracic outlet syndrome typically begin?
Typical onset of Venous thoracic outlet syndrome is adult. Age of onset can vary across affected individuals.
Which specialists treat Venous thoracic outlet syndrome?
16 specialists and care centers treating Venous thoracic outlet syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Venous thoracic outlet syndrome?
1 patient support program are currently tracked on UniteRare for Venous thoracic outlet syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.