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Thoracic Outlet Syndrome, hard to diagnose and treat, can leave patients in pain for years

This article first appeared in the St. Louis Beacon, Oct. 23, 2009 - For years, Bryan Bopp of O'Fallon, Ill., suffered excruciating pain in his neck, shoulders and back. The pain was so intense that it threw him into a depression.

"A year ago at this time I was pretty much hitting rock bottom," Bopp said. "I was just imploding as a human being."

Bopp was diagnosed with thoracic outlet syndrome (TOS), a condition that is difficult to diagnose and sometimes difficult to treat.

Patients and doctors are converging in St. Louis this week for two conferences on the condition. The events -- the first of their kind -- are being held Friday and Saturday at the Washington University Medical School campus. The medical school is sponsoring a conference for physicians, therapists and other specialists, while the American Thoracic Outlet Syndrome Association, a nonprofit support/advocacy group, is hosting a gathering for patients.

As a software consultant, Bopp, 38, spends a lot of time at the computer. He recalls how it was so difficult for him to find a position where his neck and arm didn't hurt and his fingers didn't tingle and go numb.

"The neck pain was just so intense," he said. "I had very limited range of motion in my neck."

The pain also affected his life beyond work.

"I was an outdoorsy guy into sports," he said. But as he spent more and more of his time seeking the cause of his pain and a treatment that would help, he was forced to give up many of his other interests.


Bopp's case was complicated, and his symptoms just seemed to multiply. "I had so many things going on -- rotator cuff dysfunction, bicep tendonitis, neck pain, myofascial pain which is like muscoloskeletal pain, all of a chronic nature stemming from years and years of being an athlete and doing heavy weight lifting," he said.

Then in 2005 things got even worse. Early in the year, dizziness and vertigo set in. Then he developed pain between his shoulders, sharp pains in his right arm and numbness and tingling in the pinky finger of that hand.

Bopp was seeing a doctor and a physical therapist for years. He says they were good medical people, but they apparently didn't know about TOS or enough about it. For people with the syndrome, that leads to a lot of frustration and self-doubt.

Finally, last November, Bopp's sports medicine doctor did some nerve velocity studies that suggested the possibility of thoracic outlet syndrome. TOS is actually a group of disorders with pain in the upper extremities caused by pressure on nerves and blood vessels in the thoracic outlet, an area where the neck joins the shoulder.

Bopp's doctor referred him to Dr. Robert Thompson, a vascular surgeon and director of the Center for Thoracic Outlet Syndrome at Washington University School of Medicine and Barnes-Jewish Hospital.

It was a life-changing encounter.

"Within three hours of seeing Dr. Thompson for the first time, I had an official diagnosis of neurogenic and arterial TOS and a game plan to go into surgery," Bopp said. "It was actually quite comforting to get that diagnosis -- knowing there really is something underpinning all my symptoms."

A week later, on Feb. 6, Thompson performed decompression surgery on Bopp and repaired an aneurysm in the artery. "There was recovery pain and discomfort, make no mistake," he said. But after a month, he resumed physical therapy, and about six weeks after that, the post-surgery pain subsided.

"I can focus on things I most enjoy as opposed to being on the internet trying to diagnose myself and living with the pain and discomfort of TOS," he said.

Since surgery, Bopp says he's "totally revamped" his approach to physical fitness. "I continue to do my physical therapy exercises. But now instead of going to the gym, I'm more than happy just to go out and garden or mow the lawn and do things that are a little bit more natural for the body as opposed to a hard-core weightlifting routine," he said.


While surgery brought a happy ending to Bopp's story, it's not always an answer for other TOS patients. The results are not always successful and patients can be left with the same pain --- or worse --- after surgery.

Because of that, Tanya Beulen of Oshkosh, Wis., is taking a much more cautious approach.

Beulen, 34, has suffered pain, numbness and tingling since she was a teenager. Four years ago she was diagnosed with TOS. She's seen about a dozen doctors through the years, a chiropractor and an acupuncturist with no long-lasting relief. Pain medication triggered migraine headaches for her, and her doctor ran out of treatment options.

Last year Beulen's neurologist sent her to a vascular surgeon in Madison, Wis. who confirmed the diagnosis and recommended a rib resection.

But when Beulen started asking questions, she says the doctor went from recommending surgery "immediately" to telling her that surgery wasn't necessary "at this time." She returned home for treatment at a pain center but with little relief.

Earlier this year her doctor sent her back to Madison to another vascular surgeon who, after more tests, reconfirmed the TOS diagnosis and recommended surgery. But with more questioning, Beulen says, the doctor admitted the chances for a "positive" outcome of the surgery were probably less than for a "negative" outcome.

For now Beulen isn't convinced surgery can help her and fears it could actually worsen her condition. "I'm not going down that path -- at least not yet," she said.

She said she understands why the doctors recommend surgery: Taking out the first rib or part of it would "give things more room," ease the compression of nerves and improve blood flow. "But there are so many variables that making more room doesn't necessarily fix the problem," she said.

But carrying on isn't easy for Beulen.

"The pain is constant," she said. "For me there's always a pain running down my arms and into my hands. You also feel like there's an elephant standing on your chest -- just that weight there -- and it feels essentially like someone has just hit you across the upper back with a two-by-four."

Gail M. Sault, founder and CEO of the American Thoracic Syndrome Association, agrees that surgery should not be taken lightly. She had several surgical complications that she says shook her to her core and led to a near-suicide episode.

Sault's experiences motivated her to create an advocacy and support. The West Melbourne, Fla., resident says there's a need for a "national dialogue and national research" to improve diagnosis and treatments.

Sault's medical issues prevent her from attending the first TOS conference in St. Louis, but 140 TOS patients from the U.S., Canada and England will be there. Bopp will tell his story at the conference.

Before traveling to St. Louis, Beulen was on her way to the Mayo Clinic in Minnesota for a consultation with a vascular surgeon.

"I don't know what more they can do but I'm searching," she said.

A Short Guide to Thoracic Outlet Syndrome

Dr. Robert Thompson, vascular surgeon and director of the Center for Thoracic Outlet Syndrome at Washington University School of Medicine, and Dr. Scott Werden, a radiologist, helped compile this Q and A.

What is TOS?

TOS is a group of conditions involving compression of blood vessels or nerves in the base of the neck behind the collarbone as they travel towards the arm. The compression causes pain, numbness and tingling. There are three kinds of TOS: neurogenic, venous, arterial.

The symptoms include: pain in the neck, shoulder and chest; numbness, tingling, swelling, coldness, pain or weakness in the arm and hand.

What special problems do TOS sufferers face?

People with neurogenic TOS can suffer pain so severe they may no longer be able to work and may suffer from depression. In severe cases, they can also suffer muscle atrophy in their hands.

Doctors unfamiliar with neurogenic TOS may send them to specialists who also don't understand the syndrome either. Family or friends may accuse them of faking their symptoms or being hypochondriacs.

What are potential complications from TOS?

In venous TOS, a clot can form in the compressed vein resulting in sudden arm swelling and pain. There's a small but realistic possibility the clot could go to the lung.

Aneurysms can also develop in compressed arteries. If a clots forms in the aneurysm, it can break off and go downstream to the arm threatening the blood supply to the hand hand and fingers. That could lead in extreme cases to ulceration or even amputation of the finger or arm.

What causes TOS?

Two things: anatomy and injury. Scar tissue or an inherited defect can play a role. Sometimes there's just not enough space to accommodate the nerves, veins and muscles in the thoracic outlet area. Accidents such as automobile collisions, weight training or other athletic maneuvers, such as pitching, can also trigger onset of the syndrome.

Why is TOS so difficult to treat?

Despite 150 years of trying to develop a good test for neurogenic TOS, the most common form, there are no good criteria for making a quick and accurate diagnosis.

There are no specific drug treatments for TOS. Pain medications, muscle relaxants and anti-inflammatory drugs may control the symptoms, but there is no medical treatment for the compression.

Surgery is an option for some, but it doesn't always work and presents some risks.

What are the risks of surgery?

Potential risks include nerve and blood vessel injury during the surgery, though Thompson said outcomes often are pretty good. The patient may have limited relief because of incomplete decompression, and in a small number of patients the problems may recur.

Results of surgery may not be immediate. Although some patients are back to full function within four to six weeks, it may take some people up to two years to recover fully.  

Kathie Sutin is a freelance writer in St. Louis.