Overview
Arterial thoracic outlet syndrome (arterial TOS) is a rare vascular condition in which the subclavian artery — the main artery that carries blood from the chest to the arm — becomes compressed as it passes through a narrow space between the collarbone, first rib, and surrounding muscles. This compression can damage the artery wall over time, leading to blood clots, narrowing of the artery, or even the formation of an aneurysm (a bulge in the artery wall). Unlike the more common forms of thoracic outlet syndrome that affect nerves or veins, arterial TOS is the least common but potentially the most dangerous type because it can threaten blood flow to the arm and hand. Symptoms typically include arm pain, coldness or paleness of the hand and fingers, weakness in the affected arm, and sometimes sudden loss of blood flow to the fingers. In severe cases, blood clots can break off and travel to the hand, causing tissue damage. Many patients have an extra rib (called a cervical rib) or an abnormal first rib that contributes to the compression. Treatment usually involves surgery to remove the source of compression, such as removing a cervical rib or the first rib, and repairing or bypassing the damaged artery. Blood-thinning medications may also be used to manage or prevent clots. Early diagnosis and treatment are important to prevent permanent damage to the arm and hand. Without treatment, arterial TOS can lead to serious complications including limb-threatening loss of blood flow.
Also known as:
Key symptoms:
Cold or pale fingers and handArm pain, especially with activityNumbness or tingling in the hand or fingersWeak pulse in the affected armBluish discoloration of fingersArm fatigue during overhead activitiesSmall painful sores on fingertipsWeakness in the hand or armSwelling in the arm or handSudden severe hand painSensitivity to cold in the affected handMuscle wasting in the hand
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventData sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Arterial thoracic outlet syndrome.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Arterial thoracic outlet syndrome.
Community
No community posts yet. Be the first to share your experience with Arterial thoracic outlet syndrome.
Start the conversation →Latest news about Arterial thoracic outlet syndrome
Disease timeline:
New recruiting trial: Vascular Lab Resource (VLR) Biorepository
A new clinical trial is recruiting patients for Arterial thoracic outlet syndrome
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.Do I have a cervical rib or other structural abnormality causing the compression?,How much damage has already occurred to my artery?,Is surgery necessary in my case, or can we try other treatments first?,What type of surgery do you recommend, and what is your experience with this procedure?,Will I need to take blood-thinning medications, and for how long?,What are the risks of surgery and the chances of the problem coming back?,Are there activities or occupations I should avoid after treatment?
Common questions about Arterial thoracic outlet syndrome
What is Arterial thoracic outlet syndrome?
Arterial thoracic outlet syndrome (arterial TOS) is a rare vascular condition in which the subclavian artery — the main artery that carries blood from the chest to the arm — becomes compressed as it passes through a narrow space between the collarbone, first rib, and surrounding muscles. This compression can damage the artery wall over time, leading to blood clots, narrowing of the artery, or even the formation of an aneurysm (a bulge in the artery wall). Unlike the more common forms of thoracic outlet syndrome that affect nerves or veins, arterial TOS is the least common but potentially the m
How is Arterial thoracic outlet syndrome inherited?
Arterial thoracic outlet syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Arterial thoracic outlet syndrome typically begin?
Typical onset of Arterial thoracic outlet syndrome is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Arterial thoracic outlet syndrome?
Yes — 1 recruiting clinical trial is currently listed for Arterial thoracic outlet syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Arterial thoracic outlet syndrome?
17 specialists and care centers treating Arterial thoracic outlet syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.