What Is The TOS Society?

Thoracic Outlet Syndrome Society (TOSS)

Thoracic Outlet Syndrome (TOS) is a complex condition involving compression, irritation, or direct injury of major structures within the thoracic outlet, such as the subclavian vein, subclavian artery, and the Brachial Plexus. TOS can be very painful, debilitating, and sometimes life and limb threatening. The primary causes of TOS are repetitive strain injury (e.g., due to excessive computer use), accident, and an extra rib.

The number of people affected with TOS is estimated at one to two million. Repetitive strain injury (RSI) is at least ten times that number and RSI will lead to TOS if not treated properly. Many people do not know they have TOS. Most doctors do not have the ability to properly diagnose TOS. In southern California, there are about 2,000 TOS patients that we know about.

Our organization helps organize discussion groups around the country to offer support to those who have been diagnosed with this medical affliction. Our organization charters local TOS support groups and provides meeting information, training, and support. Specifically, we provide support for early diagnosis and provide information on sources for proper care and prevention.

Our network includes office workers, grocery store clerks, nurses, attorneys, claims adjusters, musicians, athletes, and anyone else who may suffer from this condition. We find local TOS patients through medical facilities and provide a guideline for support meetings and discussions. The number of groups will grow as needed as patients discover our organization though this website, public announcements, flyers, press releases, and word of mouth. Many cured patients participate to help others. For example, the southern California group has about 35 members.

Meetings are typically held once a month in each area. Each meeting lasts three to four hours. During the meetings, patients share their stories. They talk about how they were diagnosed, what treatments they have had, what doctors they have seen, and what has worked and what has not. There are also discussions about care givers and their issues, where to get care, who to turn to for insurance, legal, and medical help, and how to organize their home life to deal with the pain and still feel productive. We do not provide any medical advice, but we will share our experience with our medical providers. Each participant has to make their own decisions, but it helps to know what others have experienced.

Alternative medical options are explored such as pain management through hypnosis, massage, and acupuncture. Guest speakers present educational information. We use volunteers’ and TOS patients’ homes, churches, and medical facility meeting places to hold our meetings. This program is open to the public free of charge.

In addition to the above, our volunteers help inform family, friends, medical practitioners, attorneys, insurance companies, and businesses of the causes of TOS and the impact it can have on a sufferer.

Furthermore, we seek to inform and teach parents and teachers to pass on the simple tips that will help computer users and game players avoid injury. It takes more than computer makers putting a caution warning, “This keyboard and mouse may be hazardous to your health!” on their keyboards!

5 Responses to What Is The TOS Society?

  1. HIGHLANDERGIRL61 says:

    Have you ever thought of going on the Dr. Oz Show to get the imformation out there about Thoracic Outlet Syndrome.

  2. admin says:

    o yes, many a times…looking forward to it and bringing along a “team” of experts

  3. Jeanette says:

    I have bilateral extra c6 transverse process ribs.Two years of searching and several doctors, I finally found a great doctor to do a rib resection. When I went in for surgery I could barely use my arm. 4 months post op,,still weak, heavy painful and numbness.Not great, but better.still unable to raise my arms above waist level , move them side the side or hold more than 2 lbs. I filled for dissability when I could no longer work. I have been denied twice and gone all the way to see a judge. Just found out I was denied benifits. These judges/attorneys/vocational experts have no idea of how complex TOS is. It was decided that I can do laundry sorting and light manufacturing work. Well, intersesting. I havs TOS Bi laterally. I havent even had the right side rib resection yet! . Since 2009 I have had arnold chairi decompression, Bi lateral carpel tunnel realease, all in the hopes of correcting the weakness in my arms/hands. Im not stopping here, I guess that means going to the appeals council. Has anyone gone through this yet ? Do I have to have an attorney for this step? (She wasnt very helpful at my hearing ) …how do I get theese people to understand and believe my condition? I am wondering if my vascular surgeon could write something up and I could send it in with my request to the appeals council. Any help would be greatly appriciated .

  4. Angel says:

    I am considering TOS decompression surgery. I would greatly appreciate input from other’s who have been through this process. Thank you:)

  5. Vicki says:

    Do you teach or support any methods to help with this or do you provide a list of practitioners that have taken your course?

    I found your site by Googling Myfascial Release

Leave a Reply