MEDICAL BREAKTHROUGHS RESEARCH SUMMARY

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1 TOPIC: Thoracic Outlet Syndrome REPORT: MB #4100 MEDICAL BREAKTHROUGHS RESEARCH SUMMARY BACKGROUND: Thoracic outlet syndrome (TOS) occurs when there is compression, injury, or irritation of the nerves or blood vessels in the lower neck and upper chest area. TOS is named for the space between the lower neck and upper chest where the grouping of nerves and blood vessels can be found. The condition can be caused by an extra first rib or an old fracture of the collarbone that reduces the space for the vessels and nerves. Other causes for TOS are bony and soft tissue irregularities. Thoracic outlet syndrome affects people of all ages and gender, but it is most common among athletes who participate in sports that require repetitive motions of the arm and shoulder, such as baseball, swimming, and other sports. Neurogenic TOS (TOS that affects the nerves) is the most common form of the disorder with 95% of people with TOS having this form of the disorder. In general, TOS is more common in women than men, particularly among those with poor muscular development, poor posture or both. (Source: SYMPTOMS AND RISK FACTORS: There are three different kinds of TOS. One affects the veins; another affects the nerves and one affects the artery. TOS that affects the artery is very rare. Symptoms of neurological thoracic outlet syndrome can include numbness or tingling in arm or fingers, pain or aches in the neck, shoulder or hand and a weakening grip. Symptoms of vascular thoracic outlet syndrome (TOS that affects the veins) can include throbbing lump near the collarbone, lack of color in one or more fingers or entire hand and arm pain and swelling, possibly due to blood clots. The following may increase the risk of developing TOS: Sleep disorders Tumors or large lymph nodes in the upper chest or underarm area Stress or depression Participating in sports that involve repetitive arm or shoulder movement, such as baseball, swimming, golfing, volleyball and others Repetitive injuries from carrying heavy shoulder loads Injury to the neck or back (whiplash injury) Poor posture Weightlifting (Sources: TREATMENT: Physical therapy, medications or surgery are used to treat thoracic outlet syndrome. Physical therapy is the first line of treatment in which a patient learns how to do exercises that will strengthen and stretch their shoulder muscles to open the thoracic outlet, improve the range of motion and improve their posture. Done over time, these exercises may take the pressure off the blood vessels and nerves in the thoracic outlet. A doctor may prescribe anti-inflammatory medications such as ibuprofen, pain medications or muscle relaxants to decrease inflammation, reduce pain and encourage muscle relaxation. Doctors may also prescribe clot-dissolving medications since venous or arterial thoracic outlet syndrome can

2 cause blood clots in a patient s veins or arteries. Surgery may be recommended if other treatments haven t been effective. (Source: FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT: Karl A. Illig, MD Professor of Surgery Director of Vascular Surgery University of South Florida Morsani College of Medicine Staff Surgeon Tampa General Hospital [email protected] If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at [email protected]

3 Karl A. Illig, M.D., Professor of Surgery and Director of the Division of Vascular Surgery at University of South Florida Morsani College of Medicine and a staff surgeon at Tampa General Hospital talks about thoracic outlet syndrome. Interview conducted by Ivanhoe Broadcast News in March Can you tell us what Thoracic Outlet Syndrome is? Dr. Illig: Thoracic Outlet Syndrome is one of several disorders of the thoracic outlet. The question is what s the thoracic outlet? The thoracic outlet is the area at the base of the neck on both sides where the artery, the vein and the nerves go back and forth. Each one of those three structures can be compressed by various problems that are occurring here. Most common is compression of the nerves, called Neurogenic Thoracic Outlet Syndrome. This syndrome occurs when the nerves pass through a triangle that s bounded by the top rib and two muscles. The nerves get squeezed and you get significant pain in that area itself, along with pain in the chest, headaches, shoulder pain, and so on. You also get symptoms of nerve problems in the hand, such as numbness, weakness, and pain especially when you re lifting your arms overhead or when you re stretching. Driving actually brings it out because you re sort of stretching your nerves by letting your arms dangle. The neurogenic form of TOS is the most problematic type because it can be very obscure and even a lot of physicians don t know much about it - it frequently can get misdiagnosed. The typical patient that we see has had symptoms for about two solid years before they re really diagnosed with neurogenic TOS. Do the symptoms come on strong or are they gradual? Dr. Illig: Usually gradually, and it s pretty rare for someone to have symptoms of less than six months duration. There are now new criteria for firmly and objectively diagnosing Neurogenic Outlet Syndrome (about to be published in the Journal of Vascular Surgery). One of the factors that didn t quite make it as a primary criterion is that symptoms really need to have been present for six months or more. It s a very chronic, slow, gradual onset problem. It comes about more in athletes? Dr. Illig: It can occur in athletes. One of the other forms of Thoracic Outlet Syndrome (which we ll discuss below) is perhaps more common in athletes, but athletes can definitely get pinching of the nerves. But we see it in all walks of life. Kids can get it, kids and teenagers. The youngest I ve seen has been about thirteen while the oldest we ve operated on have fifty or sixty, so really neurogenic TOS kind of hits in all walks of life. How do you get it?

4 Dr. Illig: The answer to that is unknown. It s basically a compression at that triangle where their muscles come together with the rib. Either the muscles or the rib get injured or inflamed or the nerves swell a little bit. It s a little bit unclear which happens. In either case there s not enough room in that area and the nerves get squeezed. A big problem is these people frequently get labeled with psychiatric disorders and depression because no one can find anything else wrong with them. They get mislabeled and beaten up psychologically, and when they finally do get a diagnosis they re often pretty happy. How can people figure out what it is in the beginning, is there a way to do that? Dr. Illig: Hopefully the medical field in general is getting a little bit better in recognizing this syndrome. The hallmark of the diagnosis is the combination of pain and tenderness at the base of the neck in the thoracic outlet, along with arm and hand numbness and tingling, sometimes with pain and weakness as well. A lot of things can cause hand numbness and a lot of things can cause tenderness at the base of the neck but really the only thing that causes both is neurogenic TOS. If the symptoms are worse with arms overhead and the scalene triangle at the base of the neck is tender, neurogenic TOS is by far the most likely diagnosis. Does it last for a month? Dr. Illig: Well no. This is a lifetime chronic problem. I ve seen several people who in retrospect probably had TOS since they were young and fifty, sixty years worth of symptoms have left them with a very dysfunctional hand. There s nothing we can do for them at this point. It s a chronic problem that usually won t go away without decompressing that area. Is this curable or fixable? Dr. Illig: Yes, very much fixable. Physical therapy has traditionally been the first line treatment for this. People who have minor problems and who are seen by excellent physical therapists can do very well without anything else. People who are very significantly affected who really can t go on with their life or their job tend not to have good relief with physical therapy alone, and those people tend to do better with an operation. Basically what we do in the operating room is we are decompressing the structures that are squeezing the nerves. Most of the time, we re removing scar and fibrotic tissue from around the nerves as well. There is several different ways we can approach this area surgically, but modern results are pretty good, especially if we have someone in whom there s no question about the diagnosis. Modern results are that probably eighty to ninety percent of people do well with surgery. In the old days we would quote patients lower success rates, but we really weren t as good about diagnosing neurogenic TOS then as we are now. Is removing a rib only for neurogenic TOS? Dr. Illig: No, we remove the rib in several different TOS syndromes. In neurogenic TOS we would remove the rib, but also ideally remove both muscles and scar tissue from around the nerves (although several different ways of doing that exist). Can the patient go back to what they were doing prior to this? Dr. Illig: Yes, very much so. If properly treated, patients have an excellent chance, again eighty or ninety percent, of resuming as whatever they were doing before, as high a level of physical exertion as they need to do. There are several professional major league baseball players who are out there who have had surgery for neurogenic TOS. Following rib resection our patients have gone on to become a Division I All-American skier, a multiple national champion collegiate swimmer, and continuing careers as

5 professional hockey players. People can return to any level of function that they want to base on this operation. Being treated for the wrong thing does that make it harder to treat what s going on? Dr. Illig: Probably not except for the chronic muscle atrophy caused by the chronicity of the problem. If we can get somebody who has had symptoms for six to twelve months they generally do pretty well. But if they ve had symptoms for six or seven years then it s a little tough. When you get to the point where the muscles start to be weak or your hand starts to atrophy, now we re really talking years before you really see improvement or final improvement even with good diagnosis and surgery. The problem with misdiagnosis is really more of a delay in treatment and sometimes it s psychological. Because again a lot of these patients are told that they are crazy. I ve had more than one patient burst in to tears when we finally said we think we know what diagnosis you have. All along they ve been told at best we don t know, and, at worst, you re crazy. Patients like knowing that they actually have something that s organic and something that s real. That happens a lot these people? Dr. Illig: Yes, very much so. Is this preventable? Dr. Illig: Probably not. It s probably mostly due to anatomy, with trauma, often minor and certainly not preventable, thrown in. There are multiple reports in the literature proposing different anatomic theories for why this happens. Most if not all TOS is felt to be exacerbated by an injury to the anterior scalene muscle. The classic mechanism would be a car crash, either a forward-backward or side-to-side whiplash type injury. Several studies have described microscopic evaluation of that muscle after it has been resected, all showing that the muscle is abnormal, scarred and abnormal in patients with TOS (and not in patients without TOS). However, many patients have absolutely no history of trauma so it s a little unclear as to whether they had something minor that they didn t remember or whether or not injury to the anterior scalene only accounts for part of the problem. Like a lot of things it s a combination of how you were born plus what happens to you in real life. As far as athletes go does that play back to like a wrestler or a tennis player? Dr. Illig: Well it does - anything that elevates the arm closes off the thoracic outlet and will make the symptoms worse. The athletes we see tend to be overhead-arm athletes. Baseball pitchers are a very classic group of people. Everybody who treats a lot of TOS has seen several high level baseball pitchers. Tennis players are another group. Volleyball players, you see teenagers in high school who are volleyball players. I ve had a kayaker and a violinist, a concert violinist and a ballroom dancer, in fact. Apparently they put their arms up over their heads like that a lot so that this would be another type of arm-overhead athlete! As far as treating you said physical therapy would be your first step and then surgery which could involve a couple of different techniques. Dr. Illig: Correct, and I would start with physical therapy for someone with minor symptoms and/or those who are a little bit phobic about the operating room. The people who have significant symptoms and who desperately want the best chance of cure are the people we usually take directly to the operating room. Is what you re doing here something common in the country?

6 Dr. Illig: It s not. The incidence of Thoracic Outlet Syndrome is very hard to pin down but it looks like it s around three to five per hundred thousand patients which is relatively rare. There are probably only twelve or fifteen sites in the country that really concentrate on Thoracic Outlet Syndrome. Certainly the coasts have excellent TOS surgeons, and there s a great center at Washington University in St. Louis. But there aren t a lot of surgeons who really concentrate on TOS; we re actually one of the only centers in the southeast. To concentrate on it simply means that you take the time to understand the diagnosis and understand the diagnostic criteria, figure out how to best treat these people, figure out how to operate correctly and pay attention to the patients. As pointed out by Dr. Rob Thompson, to do this right you also have to maintain records of the patients you treat, critically examine your outcomes, and share your findings with others in the field. The places that do concentrate on it see quite a number of patients. Several hundred per year will come through the clinic and you ll operate on anywhere from fifty to a hundred and fifty patients per year for this. Anything else you want to add? Dr. Illig: I could give you five or ten minutes on the other major form of TOS. Okay Dr. Illig: The second type of TOS, which probably accounts for ten to twenty-five percent of all cases and a third or more of operations a when the vein is compressed. The anatomy with regard to the vein is interesting and different from that involving the nerves. The subclavian vein returns blood from the arm. It does not run through that same triangle that the nerves are in. It actually passes in front of that triangle, right through the junction of the collarbone and the first rib in front, right under the breastbone. The first rib and collarbone acts like a nutcracker jaw. In the right circumstances, this nutcracker can pinch off the vein and cause chronic injury and eventual clotting. When it clots it s called Effort Thrombosis or Paget- Schroetter Syndrome, the former referring to environmental stress exercise and muscular development that contribute to the process. Venous TOS is a classic example of genetics plus environment combining to cause a problem. The genetic component is that somehow your bones and the muscles in this area are slightly more narrow than the average person. This may occur in many people without problems, but adding the environmental component is critical. The environmental factors are muscular development and, again, an arms overhead situation again, this is thus seen in athletes, especially those who have their arms overhead as part of their sport. That s why it s called Effort Thrombosis. Typically a patient will report some sort of recent or strenuous exertion or something abnormal such as transient dehydration, and they ll then present with a big, blue, suddenly swollen arm. Now this is a problem in a lot of places because it can be treated improperly. Treating someone with Effort Thrombosis is NOT the same as a blood clot in the leg. Modern treatment (for really the last twenty years) is first to get rid of the clot with clot dissolving drugs followed by correction of the underlying problem. The clot is removed with a catheter that goes right into the clot-catheter directed thrombolysis. You can usually get the vein open within a day or two but you re still faced with the underlying problem which are the bones pressing together. Essentially everybody who treats TOS would argue that at that point it s mandatory to take out the rib. Given that algorithm if we can get to the patient within the first ten to fourteen days, dissolve the clot and remove the rib the long term lifetime success rate is about ninety-five to a hundred percent. Some people are still treated as if it s a lower extremity blood clot given anticoagulation alone. This is wrong. Patients who are simply given anticoagulation alone have about a thirty three percent lifetime risk of either recurrent clot or continued symptoms. Many high profile athletes have had venous TOS. Andrei Vasilevskiy the backup and very talented goalie for the Tampa Bay Lightning, has shared his story with the public. He presented with effort thrombosis

7 after working out in the preseason. He came in right away, was treated as above, and was back on the ice two weeks later. Once he finished a temporary course of anticoagulation he was back in the net.. So as far as how this comes about this is a little different than the other? Dr. Illig: Venous TOS is more objective and mechanical than neurogenic. Once again you start with some sort of subtle anatomic predisposition; there are lots of athletes who don t get Venous TOS. But then you add on top of that, arms over head and muscular development. The muscles will further narrow that area and arms overhead will dramatically narrow that area. Both kinds? Dr. Illig: Both kinds We don t want to confuse, what do both kinds have? Dr. Illig: The thoracic outlet at the base of the neck can basically produce problems by squeezing either the nerves or the vein (rarely the artery). The underlying problem is quite similar in that the space through which those structures have to go is sometimes narrowed. The symptoms are different: Squeezing the nerves will get you hand pain and numbness chronically over time. Squeezing the vein will give you a big blue swollen arm. Although the anatomy differs, the underlying problem is pretty similar. The one very common pathway in both conditions is a relationship with arms the arms being overhead. If you are someone or see someone who has very much of an arms overhead occupation, hobby, or lifestyle and they re really having any significant arm symptoms, keep in mind that this may be a clue that some form of Thoracic Outlet Syndrome is present. END OF INTERVIEW This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters. If you would like more information, please contact: Karl A. Illig, MD Professor of Surgery Director of Vascular Surgery USF Morsani College of Medicine [email protected] Sign up for a free weekly on Medical Breakthroughs called First to Know by clicking here.