We often hear the question, “why do you spend so much time and effort on TOS?” The simple answer is simple: we care about people. It is easy to see how TOS affects the lives of patients and their families. We believe we can help.
We also care about the patients we haven’t met, and the patients we might never meet. We aim to move forward awareness, understanding, and availability of care for all future TOS patients and care providers:
Availability of Care
Meat the Team
Awareness of TOS
After patients develop TOS, they follow one of two pathways. Firstly, if they are lucky, they find a doctor knowledgeable about TOS. The doctor makes the correct diagnosis and the patient starts appropriate therapy. Secondly, if unlucky, the patient might visit a number of doctors. These doctors may not understand or be aware of TOS. Thus, the patient proceeds with worsening symptoms, without appropriate treatment.
In the latter case, patients often try to help themselves. They might search for online help, often unable to find a unifying diagnosis. How many patients have heard the term, ‘thoracic outlet syndrome?’ Thus, how would they know to search for this disease?
Furthermore, have you ever searched for ‘arm pain,’ ‘neck pain,’ or ‘shoulder pain?’ If so, you have become inundated with broad and non-specific diagnoses. It is hard to imagine how a patient could help themselves with this broad information.
So, our first goal is to raise awareness of thoracic outlet syndrome. Firstly, we want patients to hear the name enough to have a basic understanding, should they need help. Even if a patient hasn’t heard about the disease, a family member, co-worker, neighbor, or parent will have.
Second, we hope more physicians and other providers will know enough about the disease to help their patients. In general, a doctor who knows a little about a disease can find information, or refer to a specialist. Since we hear so many stories about patients visiting multiple doctors without a diagnosis, there is room for improvement.
We travel across the country to speak with physicians about TOS. Before, many simply did not know enough about the disease to feel comfortable. Now they have a resource for information.
We spend a lot of time communicating with patients and their families. In general, they ask for information and resources to learn more on their own. Frequently, they also ask for a local physician knowledgeable about TOS.
So the third important factor is to build networks for TOS patients and physicians. Read more below.
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Understanding of TOS
TOS is complex. We get that. We know a lot of doctors don’t ‘believe’ in TOS. Still other doctors don’t feel comfortable treating or diagnosing TOS. Even among the doctors who regularly diagnose and treat TOS patients, we see a lot of disagreement.
So TOS is a complex disease with an emotional overlay and a lot of disagreement. Obviously, the best step forward for patients and doctors is to learn more and to agree more.
For this reason, we have designed our website to provide education. To begin with, our visitors can take basic anatomy lessons. Then, visitors can walk through the underlaying causes of TOS. Additionally, visitors can view detailed graphics and images. We know these can assist in visualizing the complex anatomy and more complex disease.
In the long run, we aim to grow knowledge and understanding of TOS for all concerned patients and providers. Not only do we wish to share our understanding and progress, but also to help spread advancements from all experts. Additionally, we target consistency. TOS diagnosis and treatment should not be decided by city, state or institution. Each TOS patient should receive the same diagnosis and treatment.
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Availability of TOS Care
We hear from many patients of their difficulties getting the correct diagnosis of TOS. Even for patients with an accurate diagnosis, many cannot find good treatment choices. We understand, patients in pain have less strength to fight a difficult system.
Our third goal is to make TOS care available to everybody that needs it. No hassles, no arguments, no delays. We intend to see quick and accurate diagnosis, great treatment plans, and choices for TOS patients and their families. This care should be available and easy to find in every city. Every physician who sees TOS patients should recognize the disease, and be willing and able to refer these patients to experienced specialists. And every patient should be able to find a physician who can help.
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