We often hear the question, “why do you spend so much time and effort on thoracic outlet syndrome?” The answer is simple: we care about all thoracic outlet syndrome patients. We see how the diagnosis of thoracic outlet syndrome affects the lives of patients and their families. We believe we can help, and we want to help.
We also care about the thoracic outlet syndrome patients we haven’t yet met, and the thoracic outlet syndrome patients we might never meet. We work hard to move forward thoracic outlet syndrome awareness, understanding, and the availability of care for all future thoracic outlet syndrome patients.
Patients who develop thoracic outlet syndrome symptoms may follow one of two pathways. If the patient is lucky, they find a doctor knowledgeable about TOS, a true TOS specialist. This specialist makes the correct clinical diagnosis of thoracic outlet syndrome and confirms the diagnosis with good imaging. The patient starts appropriate treatment for thoracic outlet syndrome, and resumes their normal healthy life. However, if the patient isn’t quite as lucky, they might visit a number of doctors, one after the other, without a proper diagnosis. These doctors may not be aware of the symptoms of thoracic outlet syndrome or the diagnosis of thoracic outlet syndrome. Without an accurate diagnosis or appropriate treatment, the patient’s symptoms worsen, affecting their lifestyle.
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?’ We often wonder how a thoracic outlet syndrome patient would know how to search for this disease?
Have you ever searched online for ‘arm pain,’ ‘neck pain,’ or ‘shoulder pain?’ If so, you have become inundated with a large number of 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. We want the general public to hear the words ‘thoracic outlet syndrome’ enough to have a basic understanding of the symptoms of thoracic outlet syndrome and the causes of thoracic outlet syndrome. Even if a patient hasn’t heard about thoracic outlet syndrome, hopefully a family member, co-worker, neighbor, or parent will have.
Second, we realize that many physicians do not recognize the symptoms of thoracic outlet syndrome. If we successfully raise awareness of thoracic outlet syndrome, we hope to see growth in the number of thoracic outlet syndrome specialists. Since we hear many stories from thoracic outlet syndrome patients about their search for a physician who recognizes and diagnoses thoracic outlet syndrome, there is room for improvement.
We travel across the country to speak with physicians about TOS. Interestingly, many physicians simply do not know enough about the disease or have experience diagnosing thoracic outlet syndrome to feel comfortable. Now they have a resource for information.
We spend a lot of time communicating with thoracic outlet syndrome patients and their families. In general, they ask for thoracic outlet syndrome education resources to learn more on their own. Frequently, they also ask about a local thoracic outlet syndrome specialist.
So our third important goal is to build networks to connect thoracic outlet syndrome patients and thoracic outlet syndrome specialists. We are happy to help patients find a local, regional, or national thoracic outlet syndrome specialist.
Finally, we spend a lot of time and effort producing educational videos and blog posts to help raise awareness of thoracic outlet syndrome and to help TOS patients learn more to help themselves. Visit our video webpage or the TOS MRI YouTube channel.
TOS is complex. We get that. We know there are still doctors out there who don’t ‘believe’ in TOS, for no good scientific reason. Still other doctors don’t feel comfortable diagnosing or treating thoracic outlet syndrome. Even among the thoracic outlet syndrome specialists who regularly diagnose and treat thoracic outlet syndrome patients, there exists a fair amount of disagreement in best practices of diagnosis and treatment. The medical literature highlights a significant number of unresolved questions regarding TOS.
So TOS is a complex disease with an emotional overlay, professional preferences, and unresolved questions of fact. Obviously, the best step forward for both patients and thoracic outlet syndrome specialists is to create and foster an environment favoring ongoing healthy and productive discussions.
Towards this goal, we have designed our website to provide a wide variety of thoracic outlet syndrome education resources. To begin with, our visitors can take basic thoracic outlet syndrome anatomy lessons. Visitors can walk through the underlying causes of thoracic outlet syndrome. Additionally, visitors can view detailed graphics and images. These learning resources certainly help patients to visualize the complex anatomy and complex disease process we know as thoracic outlet syndrome.
In the long run, we aim to grow knowledge and understanding of TOS for all interested patients and thoracic outlet syndrome specialists. Not only do we wish to share our understanding and progress, but also to encourage discussion and recent advancements in the field from all TOS specialists. Additionally, we target consistency. Thoracic outlet syndrome diagnosis and thoracic outlet syndrome treatment should not be decided by city, state or institution. Each TOS patient should receive the same diagnosis and treatment.
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 challenging system.
As a result, we strive 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 ample 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.