Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-02-2011, 12:20 AM #1
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Thumbs up Have a TOS success story?

Any TOS success stories here?
Thats asking a lot, right?
Maybe you know of someone??

“Stories that are a paragraph or two…… 200 or so words. A success story of ultimate recognition and treatment success after initial rejection is obviously what we are looking for. If we could get a couple in the next few days, they have a chance of being published”

*New TOS medical guidline book written by the TOS consortium as a collaboration coming out soon.
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Old 07-03-2011, 03:06 PM #2
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If the criteria below relates to you or yours please email me your "story".
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Old 07-03-2011, 07:39 PM #3
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It depends on what you define as success. I was around a number of TOS patients being treated by knowledgeable experts and there were a variety of outcomes. It seemed like there were a number of factors that determined progress:

1) How much of the pain was due to ongoing tissue damage and how much due to central brain mechanisms. The latter responds well to a graded set of exercises. I saw people who lad mostly the latter return to their previous jobs as long as they exercised regularly.

2) How much damage there is and what type of damage. I was able to get significant functional gains from Peter Edgelow’s TOS program. However I was only able to get 75% through it before I reached the point where all the later exercises flared me up. People who could finish the whole program did better. I know one woman, who after finishing the Edgelow program, was able to go back to school to get her physical therapy license, And I have one friend that was unable, even with Edgelow’s help, to do any of the program because her scalenes/brachial plexus were so damaged.

3) How much knowledgeable help people get. Because of the time delay between activity and flare it can be difficult to figure out how to exercise without flaring. And exercising without flaring is key to getting better. I was totally unsuccessful in applying the Edgelow program on my own from his material but had significant improvement when he worked with me.

4) How much success people have in avoiding activates that flare the injury, esp. in the early days of the injury. I did not make much progress until I hired some help to do paperwork and household work until I healed some.


I am unclear how you define success here.
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Old 07-06-2011, 08:19 AM #4
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Default lisa tos

Yes, it is vague.
What is in quotations is what I received from the docs.
Just passing on the opportunity to share your "success" story
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Old 07-11-2011, 07:47 PM #5
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I was just told "stories" will be kept anomynous
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Old 07-13-2011, 09:22 AM #6
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Is this the same consortium formed from St. Louis? If so, are they including the other side of the coin as well in their book? .
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