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


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Old 11-06-2011, 07:15 PM #1
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Confused Any ATOSers make it without surgery?

Just wondering if any of the ATOSers on here had surgery and regretted it, or if anyone has found an alternative?

I'm scheduled for surgery next week, happened VERY fast, and I'm very scared. Dr. Gelabert pushed other patients out to get me in clinic this week and in surgery next week due to almost complete arterial stenosis and my pre-auth from insurance, which I was told normally took five days, was done in five minutes. Theyve been trying to figure out my dx for three years now, and all of a sudden it's life-threatening?

I will talk to him on Wed when I head down there; just wondered if anyone has been in my boat. I am terrified of being made worse after surgery long term.
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Old 11-06-2011, 09:07 PM #2
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I really think things will be positive for you, a good dr and careful recovery time.
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BigMama6 (11-07-2011)
Old 11-07-2011, 03:15 AM #3
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Quote:
Originally Posted by BigMama6 View Post
Just wondering if any of the ATOSers on here had surgery and regretted it, or if anyone has found an alternative?

I'm scheduled for surgery next week, happened VERY fast, and I'm very scared. Dr. Gelabert pushed other patients out to get me in clinic this week and in surgery next week due to almost complete arterial stenosis and my pre-auth from insurance, which I was told normally took five days, was done in five minutes. Theyve been trying to figure out my dx for three years now, and all of a sudden it's life-threatening?

I will talk to him on Wed when I head down there; just wondered if anyone has been in my boat. I am terrified of being made worse after surgery long term.
Its obviously a necessity to get it done so think positive and STRONG. Get yourself mentally prepared as best as possible. I have bilateral A/VTOS and had ATOS first rib excision 2 1/2 months ago. Yes, there are post op issues, I now have pulsatile tinnitus ( a strong pulsing sound in my ear on the unoperated side)..... not at all pleasant BUT at least now one side has resumed a strong blood flow and a reduced risk of aneurysm. My lymph nodes near the scarring are abit sluggish so I'm self massaging ( lymph drainage ) to help with post op swelling. I'm due to have the other side done in December so again having to mentally prep myself!
You will experience new strange sensations such as neuro signals, numbness around excision and muscle tightness which can be worrying in the few weeks post op, mine eased up ALOT after about 6-8 weeks with the help of gentle stretching exercises and very gentle massages.
My advice is purely this..... DO NOT RUSH!!!!!!!!! post op. Take your time and allow yourself to heal, properly. Some people are lucky and recover quite quickly, others have ( unforeseen) post op stuff to deal with and so need extra time off work etc.
Eat healthily and drink plenty of water to cleanse your system.
Just be sure that you have a good support system in place and don't be shy to ask for help!
REALISTICALLY: I really don't think there is an alternative....... Short of NEVER again lifting your arm to the side or raising it up or back (which brings on the compression)- it's there for life.
The odds for this type of TOS surgery are much more successful. BE POSITIVE!!!!!
Good luck and make sure that you rest well.

Last edited by SD38; 11-07-2011 at 03:41 AM.
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Old 11-07-2011, 03:46 PM #4
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Its obviously a necessity to get it done so think positive and STRONG. Get yourself mentally prepared as best as possible. I have bilateral A/VTOS and had ATOS first rib excision 2 1/2 months ago. Yes, there are post op issues, I now have pulsatile tinnitus ( a strong pulsing sound in my ear on the unoperated side)..... not at all pleasant BUT at least now one side has resumed a strong blood flow and a reduced risk of aneurysm. My lymph nodes near the scarring are abit sluggish so I'm self massaging ( lymph drainage ) to help with post op swelling. I'm due to have the other side done in December so again having to mentally prep myself!
You will experience new strange sensations such as neuro signals, numbness around excision and muscle tightness which can be worrying in the few weeks post op, mine eased up ALOT after about 6-8 weeks with the help of gentle stretching exercises and very gentle massages.
My advice is purely this..... DO NOT RUSH!!!!!!!!! post op. Take your time and allow yourself to heal, properly. Some people are lucky and recover quite quickly, others have ( unforeseen) post op stuff to deal with and so need extra time off work etc.
Eat healthily and drink plenty of water to cleanse your system.
Just be sure that you have a good support system in place and don't be shy to ask for help!
REALISTICALLY: I really don't think there is an alternative....... Short of NEVER again lifting your arm to the side or raising it up or back (which brings on the compression)- it's there for life.
The odds for this type of TOS surgery are much more successful. BE POSITIVE!!!!!
Good luck and make sure that you rest well.
Thank you SOOOO much for the words of encouragement! I definitely needed that. I guess it's the speed with which things are moving that scares me the most. But this forum has wielded some amazing advice -- far more than anyone is going to get from any doctor EVER.

Thank you all, old and new, for sharing your stories. I, for one, could not be more grateful.
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Old 11-07-2011, 06:25 PM #5
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For arterial TOS, you're looking at very good odds. As has already been said here - you have a good doctor too. I would feel much better than someone with NTOS (myself) for a complete recovery.
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Old 11-08-2011, 03:47 AM #6
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Thank you SOOOO much for the words of encouragement! I definitely needed that. I guess it's the speed with which things are moving that scares me the most. But this forum has wielded some amazing advice -- far more than anyone is going to get from any doctor EVER.

Thank you all, old and new, for sharing your stories. I, for one, could not be more grateful.
My thoughts are with you...... I know how you feel!
BEST WISHES xx
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