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

 
 
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Old 01-26-2015, 10:03 AM #3
sundance_15 sundance_15 is offline
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Join Date: Jan 2015
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sundance_15 sundance_15 is offline
Junior Member
 
Join Date: Jan 2015
Posts: 17
10 yr Member
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Quote:
Originally Posted by JennyH View Post
hi
not had it done but about to see surgeons on Tusday to discuss it so would be very interested in anyone's experience. What have they discussed with you as an option?
There was one person in New Zealand who had had a jugular vein turndown and she seemed to be doing ok immediately post op but not seen her on here since. What's your situation? I've previously had arterial and neurogenic TOS - first rib resection back in 2008 and now have venous TOS...
Jenny
Hi JennyH,

I haven't had my first rib removed. I had thrombolysis and angioplasty. The venogram showed a lot of vein scaring. My vein closed back up after a few days. It did seem to help my collateral veins. I had some collateral veins that were having issues. I've only been diagnosed with venous TOS or Paget-Schroetter syndrome. My vascular surgeon talked of the next step of having a vein bypass with a vein out of my leg along with the first rib removal. He said it was very uncertain surgery and he didn't recommend it at this point. I do have some weakness in my arm and some periodic tingling. I generally don't use my left arm very much. He told me that he's had one patent that the operation failed on and there really isn't very many case studies that indicate how successful the operation may be. We did talk about Dr. Thompson and I have read that Thompson uses larger veins from donors that they keep frozen for just this type of surgery.

I did find this article about a Dr. Thompson patient that the bypass failed on and he is just living with it and his colletarls are working for him.

*edit*

Right now, I plan on getting as healthy as possible and see how I do for a while. I have to take anticoagulants for at least a year, maybe for life. Feel free to ask any questions you have. Thanks for your response.

Last edited by Chemar; 01-26-2015 at 04:44 PM. Reason: Sorry but you are not yet at the membership level to link
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