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What is it like to be a TOS patient? 

What is it like to be a TOS patient?

Written by a TOS patient

Many TOS patients feel that the medical system has failed to understand the complexities of Thoracic Outlet Syndrome and that adequate and available TOS treatment isn't what it should be. There is a general sense of frustration among TOS patients as they maneuver their way through endless and often useless doctor's appointments, exams, tests and legal problems. Week after week, month after month, TOS patients endure incredible physical pain which, not surprisingly, tends to affect their emotional well-being as well. There is an underlying very common pattern associated with the treatment and care of TOS patients. This pattern is what we like to refer to as the "TOS Shuffle".

The TOS Shuffle: TOS patients are often shuffled from one doctor to the next, most of which know very little about TOS. One physician may order a test and the next may prescribe yet another medication. This can go on and on for months until the patient realizes that this type of care isn't working and that they just continue to be put through the medical "system". Finally it comes down to finding a TOS specialist. This usually involves convincing another physician to request a TOS specialist consultation. Ah sounds easy eh? Not so fast. It isn't!  TOS patients often have difficulty getting this consultation approved and the endless amount of shuffle begins again with Worker's Compensation, Disability, and insurance companies.

If and when a TOS patient is approved for a TOS specialist consultation it is often met with financial challenges as many TOS patients must seek this consultation outside of their home state. This can get quite expensive and sometimes is not an option for those who can't afford travel accommodations.

Often times, TOS patients turn to TOS message boards, chat rooms and blogs to find a sense of hope and a sense that they aren't alone in their struggle with TOS. They are able to find that many TOS patients have gone through similar TOS struggles and have experienced the "TOS Shuffle" as well. Through these interactive abilities, TOS patients often feel a sense of TOS compassion and understanding, something that hadn't been readily available to them from the medical community. Many times, it is through these channels TOS patients learn of new treatments, new physicians, and personal experiences that can be quite helpful to those looking for answers.

Thoracic Outlet Syndrome isn't just a condition causing mild pain. It is condition that can cause complete devastation. TOS can be mild, moderate or life threatening and many times sends patient's lives out of control. TOS is a serious medical condition that requires serious attention from the medical, mental health and legal communities as many TOS patients feel abandoned and left with no real answers or solutions.

If you or anyone you know is suicidal or having suicidal thoughts call 911 immediately or seek medical attention immediately.


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