Thoracic outlet syndromes

Title

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Not a rare disease

Other Names:

TOS

Categories:

Nervous System Diseases

Summary Summary

Thoracic outlet syndromes (TOSs) are a group of disorders with one common feature: the compression of 1 or more of the nerves and/or blood vessels just above the first rib and behind the collarbone.^[1]^[2] There are 4 recognized subtypes of TOS, each with a distinct cause and pattern of symptoms. A fifth subtype is controversial.^[1]^[3]^[4] While thoracic outlet syndromes as a group are not rare, individual subtypes of TOS are considered rare.^[4]^[5]

The subtypes include:^[1]^[3]^[4]

Arterial TOS (A-TOS) - due to compression of the subclavian artery, most commonly caused by a cervical rib. Symptoms may include blood clots, arm pain with exertion, or acute arterial thrombosis (sudden blood flow obstruction in an artery).
Venous TOS (V-TOS) - due to compression of the subclavian vein, often associated with repetitive arm activities. It may cause pain, swelling, and deep vein thrombosis.
Traumatic neurovascular TOS - occurs after trauma to the collarbone and may affect both nerves and vessels. Symptoms may include pain, swelling, bruising, weakness, and loss of sensation in the arm and hand.
True neurogenic TOS (TN-TOS) - caused by compression of the brachial plexus. Symptoms include numbness, abnormal sensations, and weakness of the arms and shoulders, as well as pain in the neck, shoulder or hand.
Disputed TOS - the vast majority of neurogenic cases. It is controversial whether it is a true form of TOS because it lacks a consistent physical abnormality, a recognized cause, consistent symptoms, a reliable method of testing, and a standard treatment. Pain and tingling or numbness in the neck, arm and hand are common complaints.

Treatment for TOS depends on the type and whether symptoms are present.^[1] Treatment may involve physical therapy, oral or injected medication (e.g. pain medicine or steroids), thoracic outlet decompression surgery, and/or thrombolytic therapy.^[1]^[6]

Last updated: 6/12/2017

Symptoms Symptoms

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 10 |

Medical Terms	Other Names	Learn More: HPO ID
80%-99% of people have these symptoms
Paresthesia	Pins and needles feeling Tingling [ more ]	0003401
30%-79% of people have these symptoms
Abnormality of the ribs	Rib abnormalities	0000772
Arthralgia	Joint pain	0002829
Edema	Fluid retention Water retention [ more ]	0000969
Muscle weakness	Muscular weakness	0001324
Myalgia	Muscle ache Muscle pain [ more ]	0003326
5%-29% of people have these symptoms
EMG abnormality		0003457
Muscle spasm		0003394
Varicose veins		0002619
Venous thrombosis	Blood clot in vein	0004936

Showing of 10 |

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Last updated: 1/1/2021

Diagnosis Diagnosis

Making the diagnosis of a thoracic outlet syndrome (TOS) can be hard because several disorders cause similar signs and symptoms. These may include rotator cuff injuries, cervical disc disorders, fibromyalgia, multiple sclerosis, complex regional pain syndrome, and tumors of the syrinx or spinal cord.^[6] TOS can sometimes be diagnosed based on a physical exam and specific symptoms present, but tests and imaging studies are often used to rule out other conditions.^[1]

Further testing to rule out other conditions or confirm a suspected diagnosis of TOS may include:^[1]

Imaging studies such as chest X-ray, ultrasound, CT scan, MRI, arteriography, or venography
Electrodiagnostic testing or brachial plexus (interscalene) block for suspected neurogenic TOS
Vascular studies for suspected arterial TOS

Last updated: 6/7/2017

Statistics Statistics

Determining the exact incidence of thoracic outlet syndromes (TOSs) is difficult because symptoms vary greatly and there is no specific test that confirms the diagnosis. Estimates of the incidence of TOSs range from 3 to 80 cases per 1000 people.^[5]

While thoracic outlets syndromes as a group are not rare, individual subtypes of TOS are considered rare.^[4]^[5]

Last updated: 6/8/2017

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Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to Thoracic outlet syndromes. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677-0850
Toll-free: 800-533-3231
Telephone: 916-632-0922
Fax: 916-652-8190
E-mail: ACPA@theacpa.org
Website: https://theacpa.org/
National Rehabilitation Information Center
8201 Corporate Drive, Suite 600
Landover, MD 20785
Toll-free: 800-346-2742
Telephone: 301-459-5900
TTY: 301-459-5984
E-mail: naricinfo@heitechservices.com
Website: http://www.naric.com/

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Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The American Academy of Orthopaedic Surgeons offers information on Thoracic outlet syndromes
Mayo Clinic has an information page on Thoracic outlet syndromes.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The Merck Manuals Online Medical Library provides information on this condition for patients and caregivers.
The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
The The Cleveland Clinic Web site has an information page on Thoracic outlet syndromes. Click on the Cleveland Clinic link to view this page.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Thoracic outlet syndromes. Click on the link to view a sample search on this topic.

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I had arterial thoracic outlet syndrome (TOS) caused by having an additional cervical rib. I had cervical and 1st rib resection on the right and left. My Question: It's not common to have an extra cervical rib. Can my children have a higher chance of also having this rib which could lead to TOS for them? See answer

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References References

Goshima K. Overview of thoracic outlet syndromes. UpToDate. Waltham, MA: UpToDate; Apr 13, 2016; https://www.uptodate.com/contents/overview-of-thoracic-outlet-syndromes?source=search_result&search=thoracic%20outlet%20syndrome&selectedTitle=1~40.
Thoracic outlet syndrome: symptoms and causes. Mayo Clinic. August 27, 2016; http://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/dxc-20237890.
Ferrante MA, Ferrante ND. The thoracic outlet syndromes: Part 1. Overview of the thoracic outlet syndromes and review of true neurogenic thoracic outlet syndrome. Muscle Nerve. June, 2017; 55(6):782-793. https://www.ncbi.nlm.nih.gov/pubmed/28006844.
Ferrante MA, Ferrante ND. The thoracic outlet syndromes: Part 2. The arterial, venous, neurovascular, and disputed thoracic outlet syndromes. Muscle Nerve. March 21, 2017; [Epub ahead of print]:https://www.ncbi.nlm.nih.gov/pubmed/28006856.
Rosenbaum DA. Thoracic Outlet Syndrome. Medscape Reference. November 11, 2016; http://emedicine.medscape.com/article/96412-overview.
Thoracic Outlet Syndrome Information Page. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/All-Disorders/Thoracic-Outlet-Syndrome-Information-Page. Accessed 6/7/2017.