Thoracic Outlet Syndrome Program Frequently Asked Questions

Who is affected by thoracic outlet syndrome?

Thoracic outlet syndrome affects people of all ages and gender. The condition is common among athletes who participate in sports that require repetitive motions of the arm and shoulder, such as baseball, swimming, volleyball, and other sports.

Neurogenic TOS is the most common form of the disorder in adults (up to 95% of cases), though we have found that in children this may not be the case and vascular involvement may be more common.

The doctors and nurses at Boston Children's Hospital knew what was best for me and did what it would take to give me a normal life, and they pushed me to get there. The staff at BCH forced me to be strong and get out of bed, no matter how much I fought it. Over months of physical therapy and doctor's appointments I began to gain my strength and endurance back. Now I am in college, I can flip on the trampoline all I want... I have a full range of motion in my arm, I can breathe and exercise normally, and I am not worried about getting another clot...


How is thoracic outlet syndrome diagnosed?

Making a proper diagnosis is the most important step in TOS. Doctors who treat this condition include surgeons (pediatric, vascular, thoracic), orthopedists, and sports medicine physicians.

To diagnose your condition, your doctor will perform a complete physical exam and will review the results of previous diagnostic tests.

In some cases, a thorough evaluation by a skilled neurologist may be recommended to rule out cervical spine disease or other neurological conditions that may be mimicking or causing your symptoms.

Additional tests performed to diagnose thoracic outlet syndrome include:
  • Nerve conduction studies (to evaluate the function of the motor and sensory nerves)
  • Vascular ultrasound studies (of the arteries or veins)
  • Chest X-ray to rule out cervical rib abnormalities
  • Computed tomography (CT) scan or magnetic resonance imaging (MRI) of the chest or spine
  • Magnetic resonance imaging with angiography (MRA) to view blood vessels
  • Arteriogram/venogram (X-ray that uses dye to look at blood flow)
Is thoracic outlet syndrome serious?

Although many cases of thoracic outlet syndrome (TOS) can’t be prevented, the condition is treatable. If left untreated, TOS can cause complications, such as:
  • Permanent arm swelling and pain (especially in patients with venous TOS)
  • Gangrene (the death of body tissue, often caused by a loss of blood flow)
  • Blood clot
  • Pulmonary embolism (travel of a blood clot to the lungs)
  • Neurogenic complications, such as permanent nerve damage
When is surgery necessary?

Although neurogenic TOS can often be treated with exercises and physical therapy, persistent symptoms may necessitate surgery.  For patients with neurogenic TOS that need surgery, the primary goal of surgery is to remove the source of compression on the spinal nerves that supply the arm, forearm and hand (the brachial plexus). This is typically accomplished by removing the first rib, anterior scalene muscle, and any additional abnormal muscles or fibrous bands. If there is an extra rib causing compression, it should also be removed.

In addition, most patients with venous or arterial TOS will need surgical treatment. Surgery for venous and arterial TOS is very effective when performed prior to the formation of blood clots. In cases of venous TOS, if a blood clot has already formed (effort thrombosis, Paget-Schroetter disease), then additional treatments are required emergently first to dissolve the clot and thin the blood. Surgery is then undertaken to reduce the risk of recurrence of the clot and symptoms. In cases of arterial TOS with clot, intervention to remove the clot and treat the TOS are often an emergency.

Known as “thoracic outlet decompression surgery,” the procedure is typically completed by making an incision or incisions above and below the clavicle or in some cases, in the underarm area.

What other procedures will I undergo prior to and after the surgery?

You may need a catheter angiogram to evaluate the patency and severity of the vascular obstruction. This typically involves placing a small catheter into the blood vessels and injecting the radiographic dye during acquisition of radiographic images. Additionally, if clots are detected, a small catheter is left in place in the vessel to infuse a clot lysing medication. This process may take several hours during which you will be monitored in an appropriate setting. The following day a repeat angiogram will be performed to evaluate for resolution of the clot. If necessary additional steps known as mechanical clot busting may be needed with gentle opening of the narrowed vessel segment with angioplasty. These procedures are performed in interventional radiology under sedation or general anesthesia.

Length of hospital stay:

Following surgery, you will stay in the hospital for several days to recover and for pain control. In some cases, another procedure using a catheter in the blood vessels may be performed while you are in the hospital to evaluate the blood vessels.

Postoperative recovery:
Physical therapy will be required after surgery to help you regain function and minimize pain and the recurrence of symptoms as well as to stabilize your shoulder and help you get back to normal function. You will be instructed to restrict your arm motion for at least 6 weeks after surgery while undergoing physical therapy. In addition, for patients requiring thinning of the blood, this will continue postoperatively for at least 6 weeks to allow the blood vessels to heal completely. Our goal is to get you back to normal function after the surgery, not simply to remove the symptoms of TOS.