A Pain in the Neck: The Mystery of Thoracic Outlet Syndrome

I went to get a massage. I had the usual complaints — a tight back, sore shoulders. But I also had a new pain, a mysterious pinch that began at the front of my neck and reached all the way to behind my right shoulder blade. What was it? The massage therapist is not a doctor. Yet he quite confidently diagnosed me as having thoracic outlet syndrome (TOS).

Baffled, I looked the condition up and thought that maybe he was right. But how could I know? And was there anything I could do about it? The massage had only helped the pain temporarily. Could it mean something serious?

For answers to these questions, I met with Margaret Tracci, MD, a vascular surgeon with the UVA Heart and Vascular Center. The conversation turned out to be a fascinating lesson in anatomy that renewed my appreciation for the complexity of the body as well as my gratitude for experts like her. It turns out TOS is just one of several issues that everyday primary care doctors may not know how to treat or even accurately diagnose. Pain relief is possible.

Types of Thoracic Outlet Syndrome

I showed Tracci where the pain started on my neck, and she identified that as the scalene muscle and confirmed that some degree of compression and tenderness in that area is fairly common.

The reason for this: That part of the body is essentially very crowded, like an entertainment system that has cords from the TV, cable box and sound system all heading to a single electrical outlet.

Three major structures travel through that space on the front of your neck:

• Your subclavian artery
• Your subclavian vein
• The brachial plexus, a set of thick nerve bundles that exit your cervical spine to innervate (enter) the arm

These three structures run through a space bounded by two layers of muscles at the base of your neck, behind your clavicle and over the first rib.

Compression of each one of these structures results in a distinct type of thoracic outlet syndrome. Repeated pressure or muscle growth can pinch or damage any one of these. And while all three types of thoracic outlet syndrome have distinct effects and treatments, their proximity to one another and overlapping symptoms make this a challenging set of issues to address.

“Even in medicine, people get them confused and think they’re the same thing,” Tracci notes. “It’s a tangle of cords and wires. The anatomy of the thoracic outlet syndrome is on all the medical anatomy tests, because it’s so complex.”

A Range of Risks: Carpal Tunnel, Clots, Aneurysms

Thoracic outlet syndrome with compression of the nerve — called neurogenic thoracic outlet syndrome — can either cause a mild form of pain, like in my case, or it can have more severe consequences. And similar nerve compression is the culprit of the ever-familiar (though not much liked) carpal tunnel syndrome, which may have similar symptoms.

Compression of the subclavian artery, for example, can lead to an aneurysm and the formation of a clot that blocks the artery. This can travel downstream and cause tissue loss in the hand or the fingers.

And when people like baseball pitchers overwork the scalene muscle and compress the subclavian vein, they can end up with scar tissue on the inside of the vein, called Paget-Schroetter syndrome, or effort thrombosis. The vein ultimately clots off with swelling of the arm and intense discomfort, as well as the risk of the clot traveling to the lungs.

How Compression Happens

“If the muscles here are hyper-developed or really tight, you end up getting the compression” that causes TOS, Tracci says. Additionally, pressure can result from “people having a cervical rib. This is above your first rib, a little baby, extra rib that you’re born with and may never know you have if it’s not associated with these types of symptoms.”

“Whatever the reason for the compression of the nerves, inflammation and scarring of the tissue forms around the nerves so that they’re not sliding easily between soft muscle, they’re trapped,” Tracci says. Thus, the pain.

Diagnostic Frustration

The tricky part of this kind of thoracic outlet syndrome is that there’s no surefire diagnostic test, and often symptoms overlap with different causes.

Sometimes, for instance, doctors will have you “raise your arms and see if your pulse goes away,” Tracci explains. But this isn’t a conclusive test. “More than half of people have that, and mostly it doesn’t mean a thing. It’s just physiology: When you put your arms in the surrender position, the artery gets compressed a little bit. But it doesn’t cause real problems for their entire lives.”

If pain persists after physical therapy (see below) and comes with neurological symptoms of the arm or hand, doctors may turn to EMG testing. Doctors can use this nerve stimulation test to “discern what pattern the pain takes, whether symptoms of weakness or pins and needles come from a nerve root distribution or from the cords of brachial plexus. Or whether it’s more peripheral, further out on the arm.”

Tracci agrees that the lack of clear diagnostics for neurogenic thoracic outlet syndrome makes this process difficult for both doctors and patients. They “tend to come to us very frustrated because they’ve been through all of this testing,” with no definitive results.

Treating Neurogenic Thoracic Outlet Syndrome

Surgery for Relief

In her experience, Tracci finds that after diligently ruling out other causes and trying physical therapy, “the majority of people will find relief from surgery.” This procedure “frequently involves taking out the first part of the first rib, which is where the muscles attach, and a section of muscle that will make sure the nerve is free.”

Tracci tells patients that surgery will be “a little bit of both a diagnosis and a treatment. Even with MRI, we don’t always see the fine details, the abnormal ligament bands. So every time we operate on somebody, it’s interesting.”

She admits that sometimes the surgery does not provide relief, and she’s very clear and upfront with her patients about the potential for an inconclusive procedure. Sometimes the cause of the pain remains “fuzzy.” “People are incredibly grateful if you’re frank with them,” Tracci says.

Another risk: People may eventually need “redo” surgery, because their bodies reform scars and the compression comes back.

A Team of Detectives

Still, the reason Tracci and her colleagues see patients from throughout the region here at UVA is due to the fact that they have the expertise and experience to puzzle through the possible sources of pain and the ways to offer relief.

“We have wonderful physical therapists who meet with people in the hospital, both pre- and post-surgery,” she says. “Our physical rehabilitation specialists, pain medicine doctors and neurologists work with us, work through diagnostics before deciding on surgery. We don’t like to sign people up for things that aren’t helpful.”

The surgery for the venous and arterial forms of TOS vary, as they focus on relieving the vein and artery compressions.

Do you have mysterious pain that doesn’t go away?

See your primary care doctor or visit the Heart & Vascular Center.

Put Your Weight Into It

Fortunately, Tracci says physical therapy can prove “incredibly effective.” And if you have the most benign form of TOS, where you’re either really tight or your muscles are unbalanced, even posture changes and exercise can help.

She talks about women she knows who start losing feeling in their fingers while brushing their hair. People ask Tracci, “’Should I stop exercising?’ And I say, ‘Not necessarily. But you may have to exercise differently.’”

In fact, she says that working with light weights, building back and tricep muscles can help counter and prevent nerve compression, even the type that affects people like her — surgeons in the operating room. “We have our arms up all the time!” she laughs.

In terms of my symptoms, Tracci suggests I go to physical therapy. And generally, she encourages people with pain to seek help. “If you don’t get relief, the symptoms can worsen,” she says. “And while we won’t necessarily have a magic bullet to fix it right away, we’ll put our heads together and figure it out.”