Blog Post #4 My Journey with Thoracic Outlet Syndrome (TOS) Diagnosis
In my first blog post I shared the story of my diagnosis with Thoracic Outlet Syndrome (TOS) at the age of 19 in 1993. Most people have never even heard of it, I certainly had not. At that time, information about this condition was scarce, and many medical professionals dismissed it altogether. Fortunately, I crossed paths with an exceptional BIPOC orthopedic surgeon who took my symptoms seriously and conducted thorough tests.
During the examination, the surgeon carefully listened to my complaints and conducted X-rays while I held heavy containers filled with sand—a painful experience that remains vivid in my memory. Tears streamed down my face from the nerve pain and spasms in my shoulders and back while the scans were done. (I don't think they do this test anymore.) The purpose of the test was to identify any upper shoulder compression that could explain my frequent loss of sensation in my arms and difficulty carrying objects (and my instrument). The results revealed an "extra rib" or unilateral cervical rib on my right side, as well as subluxation of my humerus bones bilaterally, confirming hypermobility syndrome. The X-ray above is not mine but is was the clearest picture I could find to show what the cervical rib looks like. For those of you who are not familiar with anatomy, we aren’t “supposed” to have ribs growing off of the cervical spine! Why are they there? No idea! I refer to my extra rib as Adam. (Yes, bad biblical joke)
Additionally, to further confirm the diagnosis of TOS on me, they performed the Adson's test which involved the external rotation and abduction of my arm while turning my head. I was held in this position until they could no longer detect a pulse. The lack of pulse was part of the confirmation of TOS. Don’t worry, I wasn’t having an NDE although eveything they did to me felt very painful to me. TOS symptoms can be extremely painful and, in certain cases, life threatening.
As the medical team conducted the Adson's test, I couldn't help but feel like a spectacle, surrounded by curious PT students observing my unique condition. Despite the initial relief of finally having a diagnosis, I soon realized that my journey with chronic pain was just beginning.
While commonly referred to as Thoracic Outlet Syndrome (TOS), the anatomical area it actually pertains to is the thoracic inlet, situated in the lower neck between the chest and armpit. This region encompasses a complex network of blood vessels, nerves, muscles, including the subclavian vein, subclavian artery, and brachial plexus. Compression in this area, induced by factors such as posture, instrument playing, computer use, or trauma, can lead to a variety of symptoms. Presently, TOS is categorized into various subsets, among which is nTOS (neurogenic TOS), the most prevalent form accounting for over 90% of diagnoses. Additionally, there are less common variants such as vTOS (venous TOS) affecting approximately 3-7% of cases, characterized by compression of the subclavian vein, and aTOS (arterial TOS), marked by compression of the subclavian artery between the collarbones and ribs. (see pictures and video below)
I once encountered a client with AT (Arterial TOS) who, prior to seeking sessions, experienced a ruptured blood vessel due to pressure in the thoracic inlet. This critical situation necessitated immediate surgery, during which his first rib was removed to alleviate the life-threatening condition. Although the surgery addressed the immediate danger, it failed to alleviate the persistent pressure and pain. Like myself, he turned to the Alexander Technique for relief. Through focused attention on posture and self-use, his symptoms gradually improved, enabling him to resume a normal life.
Additionally, I've had the opportunity to work with two violinists diagnosed with TOS, who primarily suffered from severe shoulder pain located between the scapula and neck. Through the practice of the Alexander Technique, they underwent postural and breathing reeducation, learning to utilize their bodies in ways that mitigated pressure in the thoracic region. This approach facilitated significant improvement in their symptoms and allowed them to continue their musical pursuits with greater comfort and ease.
In my personal and professional experience the Alexander technique, with the right teacher/practitioner and the inclusion of breath work, is the most effective treatment for TOS. I have tried it all!!
