There is very little information about this syndrome on the web. This same lack of information makes it difficult for doctors to know of, diagnose, and treat the problem. However, I pulled up some reference to it online that will help to explain my diagnosis.
What is the Thoracic Outlet?
The space between the rib cage and the collar bone through which blood vessels and nerves (3) go from the neck & thorax to the arm via passage between the scalene muscles (6, 7).
What is Thoracic Outlet Syndrome (TOS)?
TOS is pain, numbness, tingling and weakness in the affected area (my left arm) caused by pressure on the nerves & or blood vessels (mostly the nerve for me).Â In most cases the symptoms are intermittent (mine are constant). The diagnosis for TOS is not easy to make as negative test results (MRI, EMG) do not rule out the syndrome.
What Causes Thoracic Outlet Syndrome?
TOS is caused by a compression of the nerves and blood vessels. This can be due to an extra rib, old fracture, scarred tissue, or even large breasts (causing the shoulders to droop). All causes are not known.
Some people are born with extra scalene muscle fibers in both thoratic outlets, narrowing the passage (for example, I have no pulse when my arms are above my head), but this may or may not lead to TOS. In my case, it did. My diagnosis is partly a mystery, but these larger muscle fibers, and some scarring from an old whiplash injury, were partial contributors.
In my case, the pain is constant and has no main trigger to make it worse. There is no obvious compression on the nerve, but it is clear that TOS is the cause (finally). Additionally, there is some concern re: the nerve passing through my elbow, as that may also be too narrow.
Treatment varies per patient, but usually starts conservatively. My treatment will include:
- physiotherapy (Feldenkrais – a specialized type of physiotherapy)
- massage therapy
- rehabilitation therapy (to address the whiplash)
- posture correction
- ergonomics and frequent posture changes
- Botox (to relax the scalene muscle)
combination of medications
- neurontin/gabapentin – for nerve pain
- tylenol – for pain
- advil – to reduce muscle tension
- cyclobenzaprine – muscle relaxant while sleeping
Additionally, I will be getting another MRI and another EMG (not looking forward to that) and joining with a new neurologist for consultation. It is hoped that this combination of aggressive therapies will relax the muscles, which act in a vicious cycle to compress the nerve, which makes me tense, etc.
Surgery for Thoracic Outlet Syndrome is the last resort. Surgery would involve removing the scarred tissue and perhaps widening the thoratic outlet. Aggressive therapy would still follow the surgery to correct posture and relapse into TOS.
So, that is where it stands. I am happy to finally have a diagnosis (rather than just ‘chronic pain syndrome’), albeit one that is not easy to fix. I am looking forward to beginning therapy, but am not looking forward to paying for it (I don’t have extended medical at the moment).Â Â