If you're reading this you may have been told you have Thoracic Outlet Syndrome (TOS).
Maybe you've got numb, cold, tingling hands, and you can't seem to find a way to make it all go away. Surgery may have been presented as an option, and perhaps you are seeking more information on what to expect.
In this post, we're going to dive deep into the research on the diagnosis of TOS and the real results of surgery. We'll also talk about what you can do to help yourself.
Thoracic Outlet Syndrome is a complex topic. There is controversy and confusion regarding its diagnosis, treatment, prognosis, and even what term to call it. As Gliedt stated in his 2013 research article “Thoracic Outlet Syndrome remains a challenging, controversial, and often misunderstood and misdiagnosed upper extremity disorder.”
As many researchers note, surgery is not a sure or easy fix. As Laulan mentions in his 2011 article, surgery “remains very controversial.” Researcher Dawson (1993) agrees, and states that surgery should “be reserved for rare patients with documented worsening of neurologic function.” Similarly, Gleidt (2013) mentions that there is “no current consensus to the best surgical treatment."
An important issue to reflect on is whether your doctor is looking at you from a surgical perspective or a holistic perspective. Hooper (2010) discusses the frequency of diagnosis of TOS from another and notes that “one study estimated that surgeons diagnose TOS 100 times more frequently than neurologists," suggesting a strong bias for surgeons to suggest surgery for this situation.
Let's examine what the research shows on treatment through invasive surgery, and attempt to make this complex information a little bit simpler. There are several research studies that demonstrate good outcomes with surgery, but, as you will see, they are not without flaws.
First, let’s look at what complications can occur with the surgery.
A 2004 study by Orlando reviewed medical records of 538 patients who received surgery for treatment of TOS and they reported 93 to 96% improved or fully resolved symptoms. These are great numbers.
Unfortunately, these were not without complication. 23% had pneumothoraxes and 1.3% had wound infections. A pneumothorax is an abnormal collection of air in the pleural space around the lungs which will cause difficulty breathing. It is typically treated by a chest tube or a needle aspiration. A wound infection could lead to need for additional antibiotics, delayed wound healing, poor scar formation, or at worst, it could lead to sepsis. These complications were all resolved in the study, but it did make the length of stay in the hospital longer, delaying the patient’s return to work and regular life.
Another study in 1995 by Mingoli boasted 81.4% of 118 patients had good to excellent results following surgical intervention. In this study good is defined as mild residual symptoms, return to work and some sport. Of this group, 34.3% of patients had minor complications following surgery. A second surgery had to be completed in 13.5% of patients.
In research, we didn't find any reports of death or anything extremely severe happening in any large numbers, so the risks of truly bad complications appear to be limited.
All in all, the complications don't seem to be too bad. So we then should consider how effective/successful surgery for thoracic outlet is.
In 2004, Degeorges examined the follow-up of 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.
Sounds promising that 84% of patients had good or excellent results at a two-year mark, right? 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 of surgery can include the ‘possible return’ to your daily life. And 16% of the patients had even less possible return to a pain free activity in their life, in the classification of fair and poor.
So while good sounds good, sometimes it may actually consist of a life still with pain.
Another study we located was a review by Athanassiadi in 2001. They examined patients with TOS over a 10-year period at their facility. Of the 23 patients who had surgery, only two had complications, and 19 of 23 reported full relief and the remaining four reported only partial relief of their symptoms. These results sound pretty promising until you look more closely at the length of the follow up period.
These patient responses were recorded within three months to a year post operatively. That may not seem significant, but it is. The danger of this short follow-up period is that symptoms can and do come back within years after the surgery. Without longer term follow up, it’s actually impossible to say surgery was successful.
While it may seem that surgery is successful a vast majority of the time, viewed over several year timeframes, the surgery for Thoracic Outlet is not that successful.
A 2011 review article by Christo and McGreevy gives us a good overview on the surgical perspectives on TOS. It points out, as many studies do, that the literature regarding surgery is lacking. There are few studies that compare the surgical perspectives and most studies on TOS have poor follow-up and are retrospective in nature.
The recurrence of TOS symptoms most often occurs within the first two years following surgery, 60% in the first year and 80% in the second year.
Translation: within two years, the vast majority of patients have their symptoms come back. The article also points out that literature reports persistent disability in 60% of patients at one-year follow-up.
A 2003 article by Maxey reviewed 72 surgeries at a follow-up time between 14 and 24 months. The outcomes were measured in a follow-up clinic to assess for symptoms, complete range of motion, and return to previous activities without any restrictions. Complete resolution of symptoms occurred in 63.9% of patients, 23.6% partial and 9% with no resolution.
Another study encourages an 18-month follow-up period. In 2007, Barkhordarian reviewed studies looking at long-term results following surgery. It referred to another study with 409 adults who had surgery where only 21% had complete relief, 32% good relief, 25% had fair, and 22% had no improvement.
One study looked at both short and long-term follow-up. Axelrod identified 238 patients who had surgery for their Thoracic Outlet Syndrome. In their 2001 study, they described sending out a questionnaire to their patients to examine improvements in pain, paresthesias, movement, use of medications, and return to activity.
The short-term follow-up occurred at an average of 10.4 months and of the 167 responses they received, 80% of patients reported improvements in pain, paresthesias, range of motion. This demonstrated good positive results with pain and movement, but did that translate into function? By this time, about 10.4 months after surgery, only 50% of patients had returned to full activity, 9% continued their use of narcotics and 20% were still using over-the-counter medications.
The longer-term follow up was completed at an average of 47 months, and they received responses from only 89 patients.
Of these, 65% reported an improvement in symptoms, 64% reported satisfaction, 35% remained on medication, and 18% were disabled.
One big concern with this study, as the authors noted, is what happened to those who did not return their questionnaires. There were 78 patients who returned the initial questionnaire that did not return the later one. Did they have more depression, more disability, more pain, and less motivation to return this questionnaire? While the shorter-term results were positive, the long term results are not as clear.
As you can see, while many studies show a majority of “success,” if you dig deeper into the literature, you begin to notice some inconsistencies. A successful surgery may indicate that it was complication free initially, but that does not equal successful results for what a patient is looking for in the longer-term: return to work, being off pain medication, and putting their Thoracic Outlet Syndrome in their past.
A 2010 article by Bosma compared a group of patients who received operations to a group of patients who received conservative treatments. These groups were also matched to a healthy control group for a further comparison. The researchers compared the groups on several outcomes including quality of life, function, and pain.
Unsurprisingly, patients with TOS have decreased quality of life compared to their healthy counterparts, regardless of their treatment. Of the patients who had surgery, 15 out of 18 would choose to have surgery again, but four of those 15 did not feel like surgery reduced their symptoms.
In looking at function, they found that there was no difference in the limitations of function in the group that had surgery versus the group who received conservative treatment.
If the purpose of surgery is to improve your quality of life, these authors feel that “the benefit of decompressive surgery was found to be questionable”.
Another study looked more specifically at the return to work following TOS. A 2001 study by Landry followed-up with 79 patients with Neurogenic Thoracic Outlet Syndrome at an average of 4.2 years from initial intervention. Of this group, 19% were managed with surgical intervention, and 81% were managed by conservative measures.
They found that surgical patients had more missed work time than those who were treated without surgery. The overall return to work was 78% of the nonsurgical group and only 60% in the surgical group.
Regardless of surgical or nonsurgical treatment, the symptoms and pain were similar in each group. This again reiterates that surgery does not mean you will be pain or symptom free after surgery – even after over four years.
A case study written from a patient’s perspective, Deane in 2012, is very telling. It is an example of how disappointing surgery can be for some patients. She had seven total surgeries over the years of her treatment. She remains on pain medication for daily pain relief and she relies on family and friends to help her with daily activities.
Throughout the research, it is pretty clear that all patients with Thoracic Outlet Syndrome, especially the neurogenic type, should start with something noninvasive to address the musculoskeletal components of these issues. Balakatounis advised that ‘a multidisciplinary approach including exercise as the main component appears to be the most effective strategy’.
This 1997 study by Lindgren reviewed non-operative treatment research. One study they examined found that patients who started with intensive inpatient rehabilitation and continued with home exercises had 88% subjective improvement, and 73% returned to work. The follow-up was an average of two years after initiation, which, as shown earlier, is a more appropriate length for follow-up.
While many people who have been diagnosed with TOS may have tried physical therapy and rehabilitation, it is important to recognize that not all protocols for thoracic outlet are effective. If the wrong exercises are being done, little to no improvement may be seen.
Probably the most crucial thing to consider when looking at solving your Thoracic Outlet Syndrome problems is to examine your own goals and expectations from surgery. Do you need to return back to work? How quickly? Does your work include physically demanding or repetitive tasks? Are you planning on returning back to recreational activities? Are you hoping to be completely pain free? Would you like to be off of all pain medications? Do you realize you still may need other treatments after surgery (like physical therapy, injections, potential repeat surgeries)?
If you felt like things were going the right way, did you push through at a consistent pace to make progress? If not, doubling down on your efforts may be very helpful.
If you felt like the guidance you were getting wasn’t helping, have you tried finding help elsewhere? Finding someone who understands how to train your body to move and feel better can be difficult, but it is crucial piece of the puzzle. Once you understand how to train your body properly, you have a much better chance of solving your problems for the long term in a non-invasive, non-surgical way.
If you’ve seen any of my videos on Thoracic Outlet Syndrome, you know that I had some pretty troubling symptoms. The veins in my arms disappeared. I had numbness, coldness, tingling and aching constantly. Typing was a sure-fire way to cause more pain.
I struggled for years with these symptoms.
Eventually I figured out how to gradually retrain my shoulders to get them back in the right place. It took a few months to get to a place where I was generally comfortable on a daily basis. It took me a few years of trial and error to figure out how to get even more strong, stable, and resilient after that.
I'm happy to report that now I can do cartwheels and type on the computer without issue or symptoms.
I've put everything I learned over the years into a program called The Shoulder Fix that’s designed to help you help yourself. Check it out if you're looking for a straightforward way to help yourself at home.