Many patients with TOS tell us their stories. One common thread patients tell us is that they see many doctors before they are correctly diagnosed with TOS. If you think you have TOS, we would like to offer 5 simple tips to improve this process:

1. Empower yourself
2. Engage your physician as a partner
3. Find a TOS specialist
4. Make use of social media
5. Have a positive attitude

Firstly, we encourage all patients to make full use of the wonderful opportunity we have to find information on the internet. We have all heard a warning to be careful with information found on the internet. We agree that there is a lot of false or misleading information available. But in no way does that lessen the value of all the true information on the internet. Search, read, and strive to understand. Nobody will advocate for you as well as you can.

Second, even after you learn a lot about TOS, work with your doctor. We know that some doctors resent the idea that information found on the internet can replace their training and experience. We understand that feeling. But no doctor knows everything, and in our fast-moving world, no doctor can keep up with all information. On the other hand, no doctor likes to feel that they are not doing the best they can. So we advise TOS patients to partner with their doctor using some of the following techniques:

Let your doctor know up front that you are learning and searching about TOS.

Make it clear that the internet does not replace your doctor’s experience and judgement.

Ask your doctor for his or her advice and experience interpreting the information you find on the internet.

Acknowledge that TOS has been thought to be uncommon, and that many doctors receive no training in the disease.

It is important to remember that not all information on the internet is true or accurate.

Ask your doctor politely to put anything in writing, such as email, if you do not understand it. You can let your doctor know you respect his or her time, and will study yourself before you ask more questions.

Third, your doctor may or may not be comfortable with this complex disease. If they are busy, it may be hard for them to learn a lot of new information. Don’t be afraid to find a doctor who is already knowledgeable about TOS. We know this is a difficult judgment for some patients. We have heard enough stories about doctors dismissing patients’ concerns about TOS, even without adequate knowledge or experience to do so. So, if you feel your doctor isn’t fully engaged, or willing to learn and become engaged, get a second opinion.

Fourth, many people have traveled this road before you have. Social media is wonderful for finding and sharing with these people. They can help you find sources of information, learn about TOS providers, and share what treatments have worked for them. Again, we caution everybody to use a grain of salt with information and opinions gained from social media. But nobody can dismiss all the good information with a few bad apples.

Finally, stay positive. TOS can change your lifestyle, so you may need to find new sources of inspiration and satisfaction. But there has been no better time to get an accurate diagnosis and good treatment for TOS than the present.

We know some patients have lost the full support of their care team by turning negative or disengaging. Almost every TOS specialist we know has had at least one of their patients become frustrated and angry. We feel badly for both the patient and the specialist. TOS is painful and challenging, but you need your team. Stay positive!

We hope these tips will improve your chances of an early diagnosis and effective treatment.