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


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Old 11-09-2015, 02:58 PM #1
tbrockley tbrockley is offline
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I am new to forums and not even sure if I know if I'm doing this right or how I will get any responses but here it goes...
I am a desmoid tumor patient also known as aggressive fibromotosis my tumor is located on my ribs and I have had two surgeries to remove it. The first one in 2014 was done by my general surgeon by scraping the tumor off the ribs which I know now that he shouldn't have touched me...but back then I didn't know anything I didn't do any research and wasn't aware of what I was dealing with...the second surgery was in July of this year 2015 done by a thoracic oncology surgeon (with a huge ego in my opinion ) he removed part of my 9th and 10th rib to remove the tumor so in place of the hole in my ribs he put cement so my lung doesn't try to pop out of the hole! Well 3 weeks into my recovery the cement moved and guess what...my lung was trying to get out of the hole with every breath I took!! So he had to take out the cement and put some kind of biological mesh...well 4 weeks later the same thing happened..the mesh moved or ripped or something and now I live with feeling my lung going in and out of the hole....I'm trying to find out if anyone else has experienced this. I feel like I'm going crazy and my surgeon just says oh its fine everything should be scarred up enough in there...but he isn't the one that can't blow up a balloon or yell or cry or sneeze or cough...Just breathing I can feel my lung "pushing up against the mesh" per my surgeon when I'm laying down I can feel it...the left side of my chest goes up and down off the bed it's a very disturbing feeling...i need to know if this is just due to the incompetent surgeon I have or normal with rib resection? ? Please help
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Old 11-09-2015, 08:42 PM #2
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Quote:
Originally Posted by tbrockley View Post
I am new to forums and not even sure if I know if I'm doing this right or how I will get any responses but here it goes...
I am a desmoid tumor patient also known as aggressive fibromotosis my tumor is located on my ribs and I have had two surgeries to remove it. The first one in 2014 was done by my general surgeon by scraping the tumor off the ribs which I know now that he shouldn't have touched me...but back then I didn't know anything I didn't do any research and wasn't aware of what I was dealing with...the second surgery was in July of this year 2015 done by a thoracic oncology surgeon (with a huge ego in my opinion ) he removed part of my 9th and 10th rib to remove the tumor so in place of the hole in my ribs he put cement so my lung doesn't try to pop out of the hole! Well 3 weeks into my recovery the cement moved and guess what...my lung was trying to get out of the hole with every breath I took!! So he had to take out the cement and put some kind of biological mesh...well 4 weeks later the same thing happened..the mesh moved or ripped or something and now I live with feeling my lung going in and out of the hole....I'm trying to find out if anyone else has experienced this. I feel like I'm going crazy and my surgeon just says oh its fine everything should be scarred up enough in there...but he isn't the one that can't blow up a balloon or yell or cry or sneeze or cough...Just breathing I can feel my lung "pushing up against the mesh" per my surgeon when I'm laying down I can feel it...the left side of my chest goes up and down off the bed it's a very disturbing feeling...i need to know if this is just due to the incompetent surgeon I have or normal with rib resection? ? Please help
So sorry you're going through this. Seems to be a rare complication but I have heard of 2 patients reporting this problem after rib resection.

*
Also try searching "Lung Herniation" in pubmed.

Good luck and best wishes.

Last edited by Jomar; 11-09-2015 at 10:37 PM. Reason: * per guidelines
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Old 11-09-2015, 10:40 PM #3
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You might seek out a plastic surgeon, they might be better able to repair the area.
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