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What is Thoracic Outlet Syndrome, How is it Diagnosed and Treated? [Transcript]

Julie Freischlag, Vascular Surgeon talks about thoracic outlet syndrome.
Julie Freischlag, MD, FACS,
Is a vascular surgeon at Johns
Hopkins. Watch the video

Watch the video

Featuring Julie Freischlag, M.D., F.A.C.S., The William Steward Halstead Professor, Director and Surgeon-in-Chief, Professor of Surgery

Describe what you do.

My name is Julie Freischlag, I’m the Director of the Department of Surgery here at Johns Hopkins Medical Institutions and also Surgeon-in-Chief at the Johns Hopkins Hospital. I also am a vascular surgeon and I have a specialty in thoracic outlet syndrome.

What is thoracic outlet syndrome?

So thoracic outlet syndrome is a myriad of symptoms that occur in patients who have compression of the artery and the vein and the nerve that come out into the arms; it could be on both sides. And the most common is compression of the nerve. The nerve gets compressed due to two reasons: One either due to an accident such as a car accident or other trauma where you have spasm of the muscle and damage to that muscle that causes irritation of the nerve, or it could be from an occupation where you have chronic repetitive motion such as mechanics, computer programmers, and hairdressers, where they are using their arms and causing compression. And those patients present with numbness, tingling and pain in their arms.

Less common are those that are athletes that can have actually compression of the vein and when you compress the vein it can actually clot or thrombosis. And they present with a swollen arm and therefore have to have intervention because they can’t do their sport or activity.

And the last, the most uncommon, is really the arterial where the artery gets compressed and that usually requires an extra rib, such as a cervical rib, that compresses it, and those are the most dangerous where you throw clots down the arm and are actually at risk of losing your arm. Luckily it’s the least common and therefore we don’t see it as often.

How is thoracic outlet syndrome diagnosed?

So thoracic outlet syndrome is difficult to diagnose. Those with neurogenic symptoms or those with compression of the nerve, sometimes go through two or three years of testing looking for other causes of their pain symptomatology. They’ll have x-rays or MRIs of their neck and head, and they really can’t find anything because most tests are negative as the nerve is not damaged, it’s just being compressed. The most important way to diagnose neurogenic is through a good history and physical exam, ability to feel the scalene muscle in your neck, which will be tender, and inability to use your arms above your head. We’ll do provocative measures in the clinic such as elevated arm stress test, or raising your arm and turning your head where the pulse will go away, many things by our assessment of you that will tell us, “Yes, you have thoracic outlet syndrome.”

And then secondly, we’ll go ahead and inject the muscle itself, the scalene muscle with lidocane, the scalene block, and that should take away all your symptoms and if that is indeed positive, then, yes, you have thoracic outlet.

For those with venous disease, it’s really an ultrasound, a duplex scan that can look right at the vein to see the clot. Again a good history and physical with the duplex is important.

And for the arterial, as well, a duplex scan can show the arterial compression, can show the clots down the arm. And again, the history and physical and seeing a specialist is probably the most important part.

What kind of lab should conduct testing and scans?

Now, what happens to some patients if they just get their duplex scan done say in an emergency room or a smaller hospital is that they miss the clot because the clot could be much more proximal, or they aren’t familiar with arterial compression, so they actually aren’t sure what to look for. So it’s real important to have your duplex scan done at a certified vascular laboratory and certainly at one where they see a lot of these patients, such as ours at Johns Hopkins, where we scan patients with thoracic outlet syndrome all day, every day during the week. So we’re real familiar with looking at the changes that you see.

What treatment options are there for thoracic outlet syndrome?

So the treatment initially for the neurogenic thoracic outlet is very conservative.  We put people in physical therapy, massage therapy, exercising to get your back and shoulders stronger. Making sure that you’re sitting at your desk in an ergonomically correct position and all sorts of maneuvers that actually in 60-70% of patients, they can get better. If they don’t get better, you can sue one of those blocks, as I mentioned, with the  lidocane to see if whether or not your pain goes away, and then we can actually use Botox® – the things they use for facelifts – into your neck to help relieve the pain so you can do even more physical therapy. However, the Botox® injections can only be done once or twice because then the muscle doesn’t relax anymore.

Briefly describe the procedure.

Eventually, if you continue to have symptoms without getting relief from physical therapy or the Botox® injections, then you need an operation, and the operation is to remove the first rib in that scalene muscle. The way we approach is it underneath the arm; we do an incision underneath the arm, remove the rib and the muscle, and that allows that space to open up. You need to have then a few months to do physical therapy after surgery to get your strength back, but 90% of people will get their strength back and not have any pain or discomfort.

If you have the venous problem, that’s really much more acute. If you have an acute clot in your vein, then you need to have intervention quickly. The rib needs to be removed, the muscle needs to be removed, you need to be on blood thinners before and after surgery. Then we do a venogram, putting dye into the vein two weeks after surgery, to make sure the vein looks wide open and pristine. If it’s not, we’ll need to dilate it with a balloon to make sure that the vein returns to normal.

In the arterial, it’s much more emergent, even still. That if you’re throwing clots down to your arm because of compression of the artery, you need to be in the hospital immediately, treated with blood thinners or have an operation to remove the clot, sometimes having to have a bypass done to get beyond the part of the obstruction of the artery along with the rib resection. So if it is arterial, it really requires hospitalization.

What is the recovery like post surgery?

Once you remove the rib for neurogenic thoracic outlet, it really requires about two to three months of physical therapy, mainly because these patients have been disabled and really deconditioned because they’ve been in pain and discomfort sometimes for years. And so you need a few months, even up to a year of physical therapy, to get back to your previous strength.

For the venous, it doesn’t take much at all. These are athletes. Once we get the rib out, the vein is open, you’re off the blood thinner in a month or two, just a few weeks of physical therapy lets them go back to the activities of daily living. Their problem is though, they are swimmers and pole vaulters and tennis players, and so we really have to condition them well to go back to their sport, especially if they are a professional athlete, because they are at risk of injuring something else if their shoulder and their neck are not strong.

Similarly, the arterial patients need to have a little bit more time to recuperate. Because they’ve thrown clots to their artery, tends to sometimes need more physical therapy to get better and also again has had lots of pain and discomfort and therefore a few months to recuperate.

What can patients expect after treatment – is this likely to recur?

The recurrence rate for neurogenic thoracic outlet is about 10% and we see it about a year after surgery where they’ll get some scar tissue in their neck because they didn’t do enough physical therapy, or because the muscles themselves scar. We treat that by a little bit more physical therapy and sometimes Botox® injections, but the 90% of the patients don’t see that.

So, for venous patients, we really see a low likelihood of any reclotting or rethrombosis. Once we remove the rib and open up the vein, they tend to stay patent without any difficulty. We just have a few patients that may get some renarrowing years down the lane, but none really reclot.

Again the arterial patients are more complicated. Some of them will have more trouble later, especially if they have thrown lots of clot down their arm, so they need to stay on anticoagulation, or blood thinners, longer, they need to be followed very closely in our office from months to years and sometimes will require reoperation if the bypass graft does clot.

What is the most rewarding thing about what you do?

The most rewarding thing about what I do with these patients is to see them return to their active lives. These are young patients. The neurogenic patients are in their 20s and 30s, the venous patients who are active athletes and college students that really want to go forward with their activities and for the ones who are so scared with arterial disease that they may actually lose their arm. Once we fix them and can get them on a path so that they can go back to their lives, it’s wonderful to see and hear from them. I frequently get pictures from them, videos if they play the guitar, pictures of them doing their sports, letting me know that how well they’re feeling and how they’ve returned back to being a very active person which is where they wanted to be in the first place. So the success of the patients is what makes it worthwhile.

Why come to Johns Hopkins for treatment of thoracic outlet syndrome?

The reason to come to Johns Hopkins for thoracic outlet syndrome problems is because we have a center of excellence. We have great surgeons, great physical therapists, great pain management doctors, and great ability to diagnose and treat you in the right way. You may need conservative treatment, you may need an operation, it may need to be done now or in the future, and we’ll make sure that you have the right treatment plan for your symptoms and for your lifestyle. Then you’ll get to choose about how you would like to have your intervention done. We see lots of patients, we have an incredible experience and we’re able to use that experience to better treat you in the way that you need.


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