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Originally Posted by Jo*mar
I will tell you that the vascular TOS surgeries seem to have better overall outcomes.
Have they said what exactly is causing the vascular or nerve problems?
extra cervical rib or large bones, large muscles or ligaments?
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No, they just ruled out the extra cervical rib.
Quote:
Originally Posted by Jo*mar
Of course with vascular there is a risk of clots, I'm sure they have mentioned that.
Are both the veins and arteries affected- have they clarified that?
Certain vascular issues do need to be surgically addressed. 
For myself I would want to know these details.
exactly what the issues are
exactly what the surgeon proposes.
I would want to see the films and scans and have them show me what and where the problems are.
And get second /third opinions from top surgeons...to see if they all agree. |
Thank you, this is very good advice.
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Originally Posted by Jo*mar
Do you think the PT was an advanced one?
What things were they trying for her?
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Yes it was an advanced PT, one of the few in the country I'm told that work exclusively on TOS (not sure why I was typing TOC before...)
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Originally Posted by Jo*mar
I always come up with so many more questions....sorry..
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No, this is good.
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Originally Posted by Jo*mar
Have you considered an evaluation by a very expert chiropractor?
Posture , alignment might be very helpful to look into.
I will say that I had the best help from my chiropractor and also an advanced PT {a highly regarded PT teacher}.
Along with adjustments my chiro uses low level laser, IF stim, TrP, he is very well rounded with his therapies.
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She won't agree to manipulations and it may not be wise. Her PT did an adjustment on her shoulder on her first visit which shocked and scared her, but it did give her an immediate increase in mobility of her arm. However her vascular symptoms flared up near-immediately and were very bad for several days after. Her neurogenic symptoms were also much worse. The PT feels it is dangerous to try those again with her, and said she should have felt better for a couple of days after that adjustment.
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Originally Posted by Jo*mar
Hyper mobile? that can play a big part.
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Nope, that was ruled out.
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Originally Posted by Jo*mar
Our useful sticky threads above the main threads list is full of best tips, polls, saved posts & sites - be sure to look thru those, it's like a crash course for TOS. alternative therapies too.
and a drs/PT listing - you might check thru those .
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I will!
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Originally Posted by Jo*mar
I will say that is she really does need to have a surgery- that a teen I think will recover much better than the middle agers  that had surgery.
And I think many more have successful surgeries than post here or on other sites- most likely they are doing well and moving on with life. |
My son has had 5 operations on his heart from the time he was an infant, so I'm no stranger to how amazingly children heal, however this is just such a radical procedure with what appears to be not so great statistical results. But I'm having a hard time finding pediatric statistics.
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Originally Posted by Jo*mar
My niece had a 9 level spine fusion 2 yrs ago -due to severe scoliosis and she is doing very well.
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Thank goodness!
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Originally Posted by Jo*mar
Vascular & the extra c spine surgeries seem to be the ones that do best, the nerve sx may or may not improve.
I'm not a surgery fan , but sometimes it is necessary if clots are a factor.
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She has a clotting disorder which for the first time is a benefit, but there is still a risk.
Quote:
Originally Posted by Jo*mar
There are the 3 D MRIs that supposedly show things clearer - but I haven't heard much about them from anyone here for awhile.
I didn't realize I wrote a book....LOL
but if surgery isn't a necessity now or yet...
I would try Sharon Butlers TOS program { actually I did get it and so much was helpful} www dot selfcare4rsi dot com
Posture & Alexander or Feldenkrias type body work
Expert well rounded chiropractor or both a expert DC & advanced PT - {what was dd's injury?}
You can find lots of posture, TOS, triggerpoint videos on google videos or youtube - it really helps to see and watch how & what the various techniques are. some are helpful and some maybe not.
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Thanks so much for all of this information and advice. I am super grateful