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


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Old 11-02-2007, 07:39 AM #1
tshadow tshadow is offline
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Exclamation Everyone is Soooo Different

I noticed some posts lately that really bring home to me how different we are, even though we all have TOS.

This means to me that not all treatments will benefit EACH TOSer - you know if you can try it, get to it, etc., and I know I've said, "just get there, just try" and I put all of my hope and effort in, and yet, I'm still here, bedridden with TOS five years later...so it gets frustrating. but I think each TOSer has an instinct, an inner knowledge, and should go by that also. I DO give it a TRY, but I'm saying, if you know it's hurting you, STOP, I think.

Some people have developed TOS over time. Others, it was an accident situation - an acute situation. Others, had the extra rib - but I can't think of who on that one...so many causes seems logical that there are different results.

And some of us have RSD, fibro, hypermobility, kidney disease, diabetes, heart disease, asthma - these play into what one can do.

some do fine with PT - others, no matter WHAT kind, the movement alone makes us worse. I promise you that, I've tried several guaranteed TOS therapies, and the therapist in Denver even didn't TRY on me, just said, she's too reactive...(I have an inflammatory process they say)

some drive! A little, or a LOT! Others, none at all anymore! (Just differences)

some are bedridden, can't move, can't tolerate a drive (like me)

some got relief with surgery (most?) to a degree - but the degrees vary so much, and the relief / type varies

a few cannot or will not get surgery, and want to explore non-surgery (and we all support that, I think)

I have to remember that when I am dishing out my thoughts and trying to help, that we're not all the same.

I can't tolerate or even GET to any kind of PT or pool or massage...so I tend to forget those options. I didn't respond well to hypnosis or guided imagery via phone (I tried and tried, and I had someone who was willing to phone me twice a week to try), so again, I tend not to think of these...

So I'm just putting it out there, cuz sometimes I get advice here, or see something here, and I think "if I could GET to ... it would be something!" (Yes, I know if I get to it it might benefit me, I'm saying prior attempts the travel alone x'd out any benefits from the treatment cuz of the movements.)

I have to remember that some of the TOSers here might really benefit from some treatments that I don't. Just thinking out loud here, about my five year journey with TOS...
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Old 11-02-2007, 11:28 AM #2
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Default

I always think about that part of it too, when I post about different kinds of therapies or the posture & massage videos.

I wonder if this might be the one to help somebody in the extreme pain "stage" of TOS. I always hope.

But I post them too, for those that might need just a bit of help or something to ask dr or PT about- more options, more ideas- kind of thing.

Paid PT, massage or bodywork sessions can get very expensive, so anything that someone can do at home to help themselves is a good thing.

but unfortunately sometimes it doesn't
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Old 11-02-2007, 12:19 PM #3
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Default Are we in doubt that we are all different???

Hi,

I sooooo get this and have been thinking of our differences in our TOS.....REMEMBER it is a SYNDROME which means collection of symptoms so they could be similar or not.......we each experience this in different ways.

I support all and get that we are all going to have different symptoms.
I hope that we can support all people who are here and learn from our differences.....

love and hugs,
Victoria
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Old 11-02-2007, 02:16 PM #4
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Oh my goodness, you have stated it so right TAM as it seems at times people are yelling to be first to be over the falls, biggest, brightest, hurt the worst... when in my heart I would so like to share some of that persons pain , because each and everyone of us with TOS live, hurt with a uniqueness part of life and we always find something in itself worth living
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