Understanding how thoracic-outlet syndrome (TOS) occurs and is perpetuated is critical for healing to happen. It also mitigates and even prevents injury from poorly informed practitioners, something all too common.

In TOS, the overwhelming complaint is that of severe pain (insidious and progressive in its nature) and, over time, extending and migrating into seemingly unrelated parts of your body. Commonly starting in the hands, the pain increases and spreads with re-injury usually due to repetitive movement or constant, extended arm positioning. Every re-injury, something initially quite common and frequent, intensifies the pain and evokes symptom migration.

The central event responsible for this pain is an inflammatory focus, usually quite small, that makes the offending nerves especially hypersensitive. This is due to the inflammatory factors secreted, which also perpetuates that same inflammatory focus.

In most cases, the initial inflammation is caused by frequent repetitive activity or develops quickly from direct injury, such as a seatbelt following an MVA. Direct trauma is understandable – something is damaged, turning on a reparative response, the first part of which is inflammation. However, why light stretch and trivial repetitive movements (e.g. keyboard, mouse) should cause local micro-inflammation is not at all obvious. Complicating matters is the overall preponderance of women with this disorder. Still, the only thing that makes sense after eliminating other potential factors is environmental toxicity from as yet unidentified sources producing subtle, minimal effects, which add up over time.

If the pain is relatively minor to begin with, rest provides enough improvement to return to work. The usual (but now inappropriate) activities quickly result in re-injury, pain and inflammation.

The real problem is the fibrous deposition (scar) that occurs at and about the micro-inflammatory sites. It is not just simple, straight-forward scarring. It is scarring in an immature, hypersensitive, extremely innervated matrix filled with immune components, especially mast cells. Mast cells seem to be the primary cell type causing symptoms: pain, itching, burning, aching, spasm, etc. This matrix grows and spreads over time and re-injuries.

We named this matrix “innervated fibrosis” to underscore the importance of abnormal nerves in this spreading scarring.

The active chemicals produced by the innervated fibrosis (IF) migrate to adjacent and then more distant nerves, spreading the symptoms. These can vary widely, especially initially, depending on the nerves involved, and can include: headaches, cold sensitivity, numbness, burning, problems with swallowing and/or speaking, low back pain, and foot pain (among others). This often, unfortunately, makes for a difficult diagnosis. The majority of patients I have seen have been symptomatic for at least 2 years.

Recovery is a problem. First off, it is really hard to tell when you are injuring yourself. Sometimes it is clear cut, as when someone grabs you by the shoulder; but, mostly, the effects of an inappropriate 20 min. spent on a keyboard aren’t felt for 8-12 hr., at which point they occur with a vengeance. Clearly, preventing re-injury is critical, if not paramount.

Initially, especially with repetitive work injuries, rest can eliminate pain or other symptoms, but with continued re-injuries, the recovery period lengthens and symptoms increase. Once the nerves are clearly sensitized, it becomes difficult to know your limitations because of this 8-12 hr. delay. Given what you might have been doing 8-12 hr. ago, it is usually difficult to pinpoint the offending activity. Nonetheless, if appropriate limitations are not recognized, everything worsens.

What helps? Initially taking limitations to a seemingly ludicrous extent and then, after months of stability, slowly increasing specific activities (5-10 min. at a time) and then waiting 12 hr. to see if it hurts. Your body will heal, albeit slowly, when you stop re-injuring.

For those for whom it is too late, a number of alternatives exist. Since the usual anti-inflammatories (steroids, NSAIDs, etc.) don’t work, heparin offers an excellent result when used as a nerve block. The small dosages pose little risk and the result demonstrates control of the inflammation and pain in the vast majority of patients afflicted with TOS. Using heparin dramatically improves recovery in mild cases and allows for pain-free intervals in moderate-to-severe cases.

Additionally, erythropoietin helps when everything else has failed by, apparently, inducing appropriate growth hormones, of which it is one. Experience has been limited, but consistently beneficial.

Not only steroids and NSAIDs, but also mu opiates are of little benefit and can worsen symptoms. On the other hand, nalbuphine (a kappa agonist), has consistently and effectively reduced pain by over 80% once the patient has habituated to the common side effect of nausea with compazine.

Diazepam (at 10-30 mg per day) has also consistently helped people with entrapments like TOS by reducing neural irritability and spasm. Other medications can also help, but this seems to be an individual matter.

Once you understand your limitations, and they are always worse than expected, you can begin recovery. An important part of this is increasing self awareness through Alexander or Feldenkrais work, meditation or hypnosis. This helps to limit re-injury and promotes gentle neurovascular movement/massage. With good control of re-injury, mild-to-moderate cases can become asymptomatic in 3-6 mo. Unfortunately, this is in the best of cases.

In my 30 yr. of treating TOS, I have found the following interventions to be effective: 1.Obsessive attention to limitations and avoidance of re-injury 2.Use of Alexander or Feldenkrais techniques, hypnosis or medication 3.Use of heparin when symptoms cease to improve or flare-ups continue 4.Erythropoietin to speed up and improve recovery 5.Nalbuphine to control unresponsive or intractable pain 6.Diazepam to reduce neural irritability and spasm.

Most other interventions (there are individual exceptions) either worsen the situation, do nothing or provide marginal numbness, if you survive the side effects (gabapentin, Fentanyl).

Of primary importance is the recognition that you have a subtle and easily worsened nervous disorder that produces progressively more injury and sensitization with most of the activities of daily living. Additionally, there is a social pressure of dealing with a lack of observable abnormalities or pathologies that could account for your severe limitations – “I can’t see anything wrong with you”.

That’s the good news. The bad news is that IF – the pathology that causes TOS – can also hit other organs besides large nerve trunks, producing serious bowel, bladder, gynecological and other problems. For more info, see Innervated Fibrosis on my web site, www.doctorellis.com.

In summary, if you are obsessive in observance of your not-so-obvious limitations, use whatever pharmaceuticals lessen the inflammation, pain and spasm and, thus, essentially eliminate re-injury, you can achieve a pain-free and functional state in about 6-9 mo.

Call, if you have any questions.

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