If you’ve been diagnosed with Thoracic Outlet Syndrome (TOS), and someone has suggested surgery to you, you may be a bit scared. You may be anxious about the prospect of surgery, and you also may be excited that something might be able to help you after so much suffering.
The numbness, coldness, and tingling in your arms can be extremely disconcerting. The aching may keep you up at night. You’d do just about anything to end the months and possibly years of discomfort you’ve been suffering through. You’ve probably tried some stretches and a couple exercises, and they didn’t help. Now surgery seems like it might be a promising option.
Figuring out how successful surgery for thoracic outlet is can be confusing. There are a lot of studies claiming excellent overall results, but it’s extremely important to look at two key issues.
First, how is "success" measured? Often, the way surgeons measure "success" and the way you think of success can be quite different.
Second, do the studies take a long term view? If you get only short term relief, it may not be worth the time and expense.
1) What is the metric used to determine success?
In studies on the success rates of orthopedic surgeries, successful outcomes are actually not well-aligned with the desires of patients. This can lead to researchers concluding a procedure is extremely effective when the procedure is actually disappointing for the patient.
For example, In 2004, Degeorges followed up on 176 surgeries at the two-year mark via a phone survey. Overall results indicated excellent results in 49.4% of patients, good in 34.6%, and fair and poor in 8% of patients each (total of 16% fair and poor).
That makes a total of 84% of patients who had "good or excellent” results at a two-year mark. That sounds extremely promising. It would be very easy to cite this study as evidence that surgery is extremely effective for thoracic outlet.
In this study, a 50-50 chance of getting rid of all the pain is what's offered, and the summary actually hides this reality by defining"good" in a way that doesn't make sense to desperate patients.
However, if you look closely, you can see how the measurements in this study skewed toward “success." In the classification used for this study, ‘good’ is defined as the patient having intermittent pain that is "well tolerated," and a possible return to professional and leisure activities.
A ‘good’ report following surgery in this study meant you still had pain. Return to activities you find meaningful and enjoyable was not necessarily achieved.
To be clear, only about 50% got the resolution they wanted at the two year mark, and the rest still had pain. In this study, a 50-50 chance of getting rid of all the pain is what's offered, and the summary actually hides this reality by defining"good" in a way that doesn't make sense to desperate patients.
This study is representative of other studies that claim high rates of success.
2) How long was the follow up after the surgery?
This study looked at outcomes over the course of three years. The long term results are important to consider because they showyou whether improvements from the surgery actually last. A study that looks at only short term response to the surgery may demonstrate a very high success rate. Over time, that success rate may change (either for better or for worse).
That’s exactly what this study found - for the worse. At two months following an operation for thoracic outlet, the success rate was 87%. At 12 months it decreased to 53%. At 24 months the success rate dropped again to 45% (Altobelli 2005).
At 36 months after the surgery, the success rate was only 38%.
This was not a small study. It looked at 254 operations. Following the first surgery, only 46.5% of the operations were considered successful.
For those who did not have successful surgeries, another surgery was performed. The success rate after after a second surgery was 64.2%. That means about 1 out 3 did not find success in the secondary operations.
As you can see, the long term follow up made a huge difference.
However, the paper did not call much attention to another factor that we talked about earlier: what was the metric used to determine success?
As in the Degeorges study, the “success” rate is of questionable validity and usefulness when compared to patient expectations. If you’re someone looking to end your suffering, you’re looking to get rid of all the pain and get back to doing all the stuff you love.
In this study, in order to qualify as a success, the patient needed to report only that the surgery gave them a 50% (or more) reduction in symptoms. Let’s be clear: the surgery did not have to cure the symptoms. It didn’t even have to get rid of 90% of the symptoms. It only had to give a 50% reduction to be called successful.
...the surgery did not have to cure the symptoms. It didn’t even have to get rid of 90% of the symptoms. It only had to give a 50% reduction to be called successful.
And, even given this low bar for success, the surgeries failed in 62% of the cases over three years. Those are not great odds of success.
If you’ve been told that surgery for thoracic outlet has a high probability of helping you, it’s a good idea to ask for studies that back up that claim. The reality is that over the long run, surgery for thoracic outlet appears to have a very low success rate, especially if you’re expecting the surgery to completely get rid of your symptoms.