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Giving Answers.  Giving Hope.

The term thoracic outlet syndrome (TOS) was first used to describe this condition back in 1956.  Although it is considered to be a rare condition, it can be an extremely painful and debilitating condition and not to mention at times life or limb threatening in its vascular forms.  Since 1956, a lot of things have been associated with TOS -- namely controversy in addition to patients cycling through several different physician specialists, several incorrect diagnoses, several unnecessary surgeries, and several years of symptoms.  One thing that has not particularly been associated with TOS is resources – for both clinicians and patients.  It can take the average TOS patient several years (some even close to 20 years!) and seeing an average of 7 different specialists to get an accurate diagnosis. During all those years spent attempting to get answers to their suffering, due to the severe chronic pain, the patient can lose the ability to work, to take care of their family, to take care of themself, and sometimes even lose their will to live.  They are often left with nowhere to turn as their doctors are stumped, and they are left feeling hopeless.  It is an extremely terrifying feeling when something is wrong with you, but your doctors do not know what it is.  If no one knows what it is, how can you fix it?

Very few doctors want to specialize in TOS.  It is a rare, extremely complex, and multi-faceted condition that can require a challenging treatment course.  The very few surgeons over the years who have decided to specialize in TOS have worked incredibly hard to pave the way for TOS and to put it at least as a speck on the map by publishing research studies, developing and publishing standardized diagnostic criteria, training residents/fellows/other physicians, creating a textbook dedicated solely to TOS, presenting at medical conferences, and by generally raising awareness within the medical community however they can.  This has taken TOS lightyears from where it was in 1956, which is beyond incredible.  However, they cannot do it all, and there is still more to be done. Unfortunately, a large number of physicians today are still unaware of TOS.  Others are aware of it but have inaccurate or outdated knowledge as to what it is, how it is diagnosed, and how it can be treated. The general public (aka the patients) have an even lower awareness of it.

TOS Outreach Network was created in 2022, and our primary goal is to provide a legitimate, accurate, and universal in-depth resource for patients, their families, and clinicians for the sole purpose of educating about and raising awareness of TOS.  As stated above, TOS is not well known within the community as a whole including among physicians which often leads to a lengthy years-long process of getting a TOS diagnosis. The more people who are aware of TOS, its symptoms, and characteristics, the more quickly a diagnosis should be able to be made. A shorter path to diagnosis can mean the difference between permanent and reversible damage and improving long-term treatment outcomes.  These days, and particularly with TOS, patients are often searching the internet to find answers to their suffering.  Via this website, social media, and other advocacy campaigns, we aim to provide desperately needed answers to patients regarding what TOS is, diagnosis, physician selection, treatment options, surgery recovery and beyond.  And with answers, comes hope.

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