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


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View Poll Results: What Are Your Thoughts on TOS Surgery?
Would Never Do It - Risks Are Far Too Great 1 3.03%
Would Never Do It - Risks Are Far Too Great
1 3.03%
Would Do It Only If Other Options Were Unavailable 11 33.33%
Would Do It Only If Other Options Were Unavailable
11 33.33%
Had The Surgery - I am Better Long Term 9 27.27%
Had The Surgery - I am Better Long Term
9 27.27%
Had the Surgery - I am Worse Now. 3 9.09%
Had the Surgery - I am Worse Now.
3 9.09%
Had the Surgery - I am The Same. 2 6.06%
Had the Surgery - I am The Same.
2 6.06%
Will Do It Bilaterally 5 15.15%
Will Do It Bilaterally
5 15.15%
I Am Schedule To Have the Surgery 8 24.24%
I Am Schedule To Have the Surgery
8 24.24%
Would Rather Take Opioids Indefinitely 1 3.03%
Would Rather Take Opioids Indefinitely
1 3.03%
Will Have a Repeat Operation to First 1 3.03%
Will Have a Repeat Operation to First
1 3.03%
Multiple Choice Poll. Voters: 33. You may not vote on this poll

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Old 12-06-2011, 11:40 AM #21
chroma chroma is offline
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Quote:
Originally Posted by astern View Post
In my opinion, 50% is better than 0%. Success = any improvement, no matter how small. Success doesn't have to mean a complete return to wholeness.

I think I am somewhat better having had the surgery. I believe I have both neurogenic and arterial TOS. The extra ribs, fiberous bands and extra scalene took their toll on everything running thru the Thoracic Outlet.
I think the "50%" means what % of people report improvement, not how much improvement they reported which seems to be how you and zerodgirl are interpreting it.

I don't see anything in this survey or thread about how much the people who improved have improved by.

Or maybe I just haven't woken up yet.
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Old 12-06-2011, 01:38 PM #22
343v343 343v343 is offline
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I'm sure "improvement" is subjective. As is the 1-10 pain scale. At this point if someone told me, look "we can ensure your symptoms never get any worse than where you're at." I'd consider that a successful surgery. Because with each day, my symptoms get a little worse than the day prior. That's scary to me.

It's funny (or sad) how my interpretation of "success" has changed after having this for so long. With each conservative method I try, I become more desperate for some kind of answer. It feels like the clock is ticking, I guess.

I think anyone who has considered or done the surgery knows/knew the possible risks and complications. I have personally read every bit of literature I can get my hands on. I will still feel quite scared if that is indeed my only option left (the surgery). But I am simply saying it's refreshing to hear of some who have attained improved quality of life. *Whatever that means to them, respectively.

If every single story were negative, it would make the decision that much more depressing and scary. I went through each page of this forum, going back 5+ years and PM'd everyone I could find who had surgery. Was curious as to their results. Of course, many didn't sustain their relief, but it was a little more comforting to see more than I expected who actually did. *With NTOS, even - many years later.

Obviously from a pure statistical standpoint, the odds / prognosis are still poor. But when hope is in short supply, I'll take all I can get.
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Old 11-06-2013, 05:21 PM #23
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Default choose your surgeon carefully

Quote:
Originally Posted by Shoestringlover View Post
there is an article on pitchers and athletes with TOS: here is the title if you want to google it ****: What thoracic outlet syndrome could mean for Yankees pitcher Phil Hughes

here is another i found through this article: Ribs lost, careers saved: WUSM surgeon gets athletes back on the field
Re. Dr. Robert W. Thompson, profiled in the "Ribs Lost, Careers Saved" article, the article certainly praises him as a top specialist in this field, but check out what some of his patients say. Look him up under the ratemds and vitals websites. (sorry, I'm unable to post the relevant links - if you google his name and "ratemds" and/or "vitals" you'll find the reviews).

Be sure to carefully research and vet any doc you're considering.
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Old 11-06-2013, 10:06 PM #24
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I haven't had any surgery yet. However, if I do and get all better, I won't hang out here anymore, sorry guys. I will be too busy painting my bathroom!
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Old 11-09-2013, 01:03 AM #25
tinesh01 tinesh01 is offline
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hi everyone..im 1month post op left tos surgery..had a scalenotomy and rib resection...now im having it in the right side..its considerably worse...what is ur opinion shall i go for another surgery or not?need all ur advice .....
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Old 11-09-2013, 02:11 AM #26
President_Taft President_Taft is offline
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Default Positive story

Quote:
Originally Posted by 343v343 View Post
I think anyone who has considered or done the surgery knows/knew the possible risks and complications. I have personally read every bit of literature I can get my hands on. I will still feel quite scared if that is indeed my only option left (the surgery). But I am simply saying it's refreshing to hear of some who have attained improved quality of life. *Whatever that means to them, respectively.

If every single story were negative, it would make the decision that much more depressing and scary. I went through each page of this forum, going back 5+ years and PM'd everyone I could find who had surgery. Was curious as to their results. Of course, many didn't sustain their relief, but it was a little more comforting to see more than I expected who actually did. *With NTOS, even - many years later.

Obviously from a pure statistical standpoint, the odds / prognosis are still poor. But when hope is in short supply, I'll take all I can get.
15 months post op. Significant improvement from before. Still have some middle scalene, pec minor tightness (no pec release done with surgery), and a little bit of scar tissue, but I would say I'm 90% improved. Just gotta keep stretching and do manual work on the scar tissue. Surgery was with Dr. Lee at Stanford. He's very straight-forward and to the point (he can seem like he's rushing appointments when talking to you at times), but he's a pretty skilled surgeon.

I personally know four other athletes who have had this surgery in college (all friends of mine). I consulted with all of them before I had surgery of my own. Two went on to compete better in their sport than before they first had symptoms of TOS. One got back to right around where they were before they had symptoms. One never got back to being a big contributor and dealt with some nerve issues for a few months (brachial plexus and LTN caused some pretty severe winging). Overall, however, that individual has since improved probably 60-70% from where they were before surgery.

So... all in all, including myself, I know five people who have improved (four of them very significantly).

Find the best surgeon and be incredibly disciplined with your post-surgical regiment. I started PT and tissue breakdown pretty soon afterward. That can help, too.
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