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Thoracic Outlet Syndrome (TOS)

Medical Author: William C. Shiel Jr., MD, FACP, FACR

Patient to Patient

Plumbing the Pits of Despair with Thoracic Outlet Syndrome

One patient's story

Author: Betty Kovacs, MS, RD
Medical Editor: Melissa Conrad Stöppler, MD

A diagnosis of thoracic outlet syndrome didn't come easy.It took three years and three months, three MRI's, two x-rays, two EMG's, and nine health-care professionals for me to feel better. It was a journey that felt like forever with exhausting highs and lows. Each new doctor's appointment was entered into with hope and walked out of in despair. Those who were unable to diagnose my condition were able to make me think that it was all in my head. Fortunately, or unfortunately, my symptoms progressed and out of desperation I gave one last doctor a chance. That last chance saved my sanity and gave me back my life.

My symptoms started off somewhat vague. I had taken on a new position at work that required a lot of time on the computer. I began having pain on my right side in my neck and shoulder with tingling in my hand at the end of the day. I felt a lump on my cervical spine that I assumed to be the cause of the symptoms. I went to an orthopedic surgeon who sent me for an MRI to rule out a tumor. I was assured that he had never seen a tumor in that area, but that did not ease the heart-wrenching fear of a possible tumor. I soon learned that I did not have a tumor and that I was too claustrophobic to ever get back in an MRI machine. I was so relieved that I decided to wait and see if the symptoms went away on their own.

For the next year, I got massages and stopped lifting weights to help with my pain. My outer three fingers on my hand had begun getting cold at the end of the day. As time went on, they would get cold after a few hours. I couldn't tell if the shoulder pain was causing the hand pain or vice versa. I went to a leading hand surgeon to figure out what was going on. The diagnosis was discomforting. I was told that this was simply a case of poor posture and that physical therapy (PT) would correct it. I have been tall my entire life, so my posture is a sensitive area. At 32 years of age, I did not expect to ever hear that I have to sit up straight again.

After much hesitation, I went to see a physical therapist that a friend had recommended. We explained my situation and asked if he could figure out the cause of my symptoms. He examined me and walked in with a book that showed an image of something called thoracic outlet syndrome (TOS). It was the first time that I felt that sense of relief that you get when something finally makes sense. I tried PT for three months and did not get relief from my symptoms. My physical therapist and I decided that I needed medical assistance with this.

I went to a physiatrist who took a chest x-ray and told me that I had a cervical rib, which is a very common cause of TOS. He gave me valium for the spasms in my shoulder and chest (by my armpit) and recommended that I increase PT to twice a week. I did so for two more months until one day my three fingers went cold doing an exercise that I had done for the past five months without any problem. My physical therapist was at a loss for what to do, so I was back to square one.

Patient to Patient

What is thoracic outlet syndrome?

Thoracic outlet syndrome is a condition whereby symptoms are produced from compression of nerves or blood vessels, or both, because of an inadequate passageway through an area (thoracic outlet) between the base of the neck and the armpit. The thoracic outlet is surrounded by muscle, bone, and other tissues. Any condition that results in enlargement or movement of the tissues of or near the thoracic outlet can cause the thoracic outlet syndrome. These conditions include muscle enlargement (such as from weight lifting), injuries, an extra rib from the neck at birth (cervical rib), weight gain, and tumors at the top of the lung (rare). Often no specific cause is found.

It is felt by some researchers that the evolution of the torso of primates from a four-legged to a two-legged position may predispose humans to the development of thoracic outlet syndrome. The resulting vertical posture produced flattening of the chest cage and a shift of the shoulder joint backward, both of which narrowed the thoracic outlet.

What are symptoms of thoracic outlet syndrome?

Symptoms include neck, shoulder, and arm pain, numbness, or impaired circulation to the extremities (causing discoloration). Often symptoms are reproduced when the arm is positioned above the shoulder or extended. Patients can have a wide spectrum of symptoms from mild and intermittent, to severe and constant. Pains can extend to the fingers and hands, causing weakness.

How is thoracic outlet syndrome diagnosed?

The diagnosis of thoracic outlet syndrome is suggested by the symptoms and supported by findings of the doctor during the examination. Certain maneuvers of the arm and neck can produce symptoms and blood vessel "pinching" causing a loss of pulse. Further supportive testing can include electrical tests, such as electromyogram and somatosensory evoked responses (although these may not be positive in all patients). Some patients can have angiogram x-ray tests that demonstrate the pinched area of the blood vessel involved.

What is the treatment for thoracic outlet syndrome?

Treatment of the thoracic outlet syndrome can usually be successful with conservative measures. Treatments include a variety of exercises that effectively stretch open the tissues of the thoracic outlet. These are done with and without weights in the hands to pull the outlet into a "relaxed" open position. Physical therapists are specially trained in the instruction of exercises for thoracic outlet syndrome, and their evaluation of the patient can be helpful. Shoulder-shrug exercises and others can be done at home or at work to relax the muscles around the thoracic outlet.

Patients should avoid prolonged positions with their arms held out or overhead. For example, it is best to avoid sleeping with the arm extended up behind the head. It is also helpful to have rest periods at work to minimize fatigue. Weight reduction can be helpful for obese patients. Patients should avoid sleeping on their stomach with their arms above the head. They should also not repetitively lift heavy objects.

Some patients with severe, resistant symptoms can require surgical operations to open the thoracic outlet. These procedures include removal (resection) of the first rib in order to spare injury to the affected nerve and blood vessels from ongoing compression.

Thoracic Outlet Syndrome At A Glance
  • Thoracic outlet syndrome is a condition whereby symptoms are produced from compression of nerves or blood vessels, or both, because of an inadequate passageway through an area (thoracic outlet) between the base of the neck and the armpit.
  • Symptoms include neck, shoulder, and arm pain, numbness, or impaired circulation to the extremities (causing discoloration).
  • Diagnosis of thoracic outlet syndrome is suggested by the symptoms and physical findings and is sometimes supported by electrical and/or radiology tests.
  • Treatment of thoracic outlet syndrome usually involves physical-therapy exercises and avoiding certain prolonged positions of the shoulder.

References:

Clinical Primer of Rheumatology, Lippincott Williams & Wilkens, edited by William Koopman, et al., 2003.
Kelley's Textbook of Rheumatology, W B Saunders Co, edited by Shaun Ruddy, et al., 2000.






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Last Editorial Review: 2/20/2008





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