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


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Old 09-19-2016, 02:34 PM #1
heidio heidio is offline
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Smile Surgery or no? Please help :)

Hello, I am so happy to have found this forum, and I apologize for the long post...
I am a 47 year old female who has been having symptoms of TOS since about age 10. My main symptoms had been bulging veins and change in color of my left hand and arm when I would do activities such as play piano, do dishes, etc. These symptoms never bothered me much and would disappear as soon as I would shake my arm out, and often would disappear for months at a time.

Earlier this year, the symptoms started coming on more often and with more severity to the point where my arm was almost constantly affected. I decided to go and have things checked out and was admitted into ICU due to having a large clot in my subclavian vein.

The attending Dr. broke up the clot and placed in a stent which "crushed" in less than two weeks being that it was placed between my first rib and clavicle. I decided at that point to see another physician who then weaned me off the blood thinners and said that my condition was mostly uncomfortable and not considered life threatening. Never was the condition Thoracic Outlet Syndrome mentioned to me by either doctor.

Six months later, my symptoms came back full force. Again, I was admitted to the hospital with a large clot in my subclavian where the stent was placed. This time I found a vascular surgeon who explained to me what was causing the clotting and his recommendation is decompression surgery via the supraclavicular approach. The clot has been broken up and I am currently on Lovenox while waiting to make my decision.

I decided to get a second opinion and saw Dr. Hugh Gelabert at UCLA. His approach is the transaxillary approach. I liked the fact that Dr. Gelabert has done so many of these surgeries, well over 950, and he was very calming and reassuring.

I have no pain whatsoever (with the exception of a burning due to the stent pressing on my clavicle), and being on the blood thinner, I am symptom free. I am super fearful of nerve damage during the surgery that will make my quality of life worse.

Can anyone give me input as to the success rates of the two different approaches? Also, I am totally open to seeing if there is therapy I could do to avoid surgery altogether. I do have TMJ and was also told by Dr. Gelabert that my posture and shoulder height is not symmetrical. Finally, would remaining on blood thinners long term be harmful? I am active and want to maintain my lifestyle.

Any input would be so greatly appreciated!
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Old 09-19-2016, 04:42 PM #2
micaheldorseyNTOS micaheldorseyNTOS is offline
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hello, I just had surgery for Ntos from UCLA Dr, gelabert August 25. I didn't have any never issues when he did my surgery, but I still have my symptoms 3 weeks post OP.
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Old 09-19-2016, 04:44 PM #3
micaheldorseyNTOS micaheldorseyNTOS is offline
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you need to try physically therapy before surgery, and work on your posture!!!! I tried rehabbing mine for 5 years before I got surgery.
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Old 09-19-2016, 05:53 PM #4
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VTOS (clotting & vein issues) has much better odds for a good recovery.
Barring any accidents or mishaps..post op..
Main factors for a positive VTOS surgical recovery are -
expert surgeon with TOS knowledge. you have that..

If you have poor upper posture, head forward, shoulders hunched or rolled forward? If so working on that aspect may lessen the crowding in the head/chest/neck area..
Some simple posture ideas for at home-


*lay on foam roll or large towels rolled up tightly lengthwise under spine neck to tail bone - small pillow if needed for neck comfort - then just relax with arms at a comfortable position so shoulders can drop with gravity
http://www.oprah.com/own-show/the-ea...e-your-posture

Your doctors should be able to address the blood thinner questions , and how long are they safe.
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Old 09-28-2016, 06:30 PM #5
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Quote:
Originally Posted by micaheldorseyNTOS View Post
hello, I just had surgery for Ntos from UCLA Dr, gelabert August 25. I didn't have any never issues when he did my surgery, but I still have my symptoms 3 weeks post OP.

Sorry to hear that you are still having symptoms post op. Are you starting to feel any relief?
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