Thoracic Outlet Syndrome (transaxial surgery ~8 years ago)

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I'm hoping to hear from anyone though realize it's an old thread, that could actually be helpful. I'm writing in regards of my boyfriend who has a major adversion to doctors and hospitals, likely stemming from getting a transaxial (through armpit) surgery for artero TOS when he was in high school, a year apart on either side. He will be 26 in April and had these done when he was 17 and 18 when his arms swelled drastically and lost feeling and I believe grew pale suddenly a while after getting serious about weight lifting. I know his doctor told him it was an experimental surgery, though it could've been his first time as it was performed in OSU medical, a teaching hospital in Ohio that I doubt gets a lot of traffic for the condition. I know they told him he wouldn't be able to play drums the same for a very long time, if ever, but he pushed himself to be performing again within 6 weeks by duct taping the sticks in his hands (his band was actually touring a few states, he's pretty good and it is definitely an arm intensive activity) but also remember stories of him not being able to hold a pencil in school. I've actually held the pieces of rib he got removed, his mom had one made in to a necklace for his last birthday, and it seems they took about 2 inches to make a gap? From what I've read on here it sounds like in other cases the surgeons chose to remove much more? 

I'm asking because he's recently told me he still feels it regularly in his left arm, muscle weakness/pain and that nerve tingling, his hands shake often, he complains of headaches in the back base (like directly inferior to external occipital protuberance) which I've read are a symptom? I just wanted to know if in your opinion/experience if this was common? Like a ghost pain or result of nerve damage, an unsuccessful surgery? I wish he would talk to a doc about it but refuses, he has done a lot of drumming/manual labor since high school, I'm not sure if that could've made things worse, and I don't have every faith in the hospital or surgeon, though he says he was a great guy he sounds inexperienced...his family didn't have another option financially. 

I was hoping to hear of any ways to lessen the pain he is still living with or if this is possibly more serious than he lets on, or maybe if you guys have had the same things happen? It's just been over 8 years and I would hope the full recovery would be done by now but I'm no expert, and if he needs another surgery to resolve this idk I would have to really talk him in to even getting it looked at again. 

Thanks in advance!

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  • Posted

    **sorry copy and pasted a reply to an old thread, hence the first line whoops.
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  • Posted

    If you are a Facebook user, there are two wonderful support groups for Thoracic Outlet Syndrome on Facebook.   The members post a lot of helpful information and support for those with TOS.   Search "Thoracic Outlet Syndrome" and asked to be added to the groups.  

    Best of luck,

    Jeanne Solze

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  • Posted

    My Surgeon told me anyone who goes in through the armpit doesn't know what they are doing He is one of the best if not the best in in southeast side of America and specializes in this procedure! All the nerves are on top and are not visible trasaxilary the veins lay closest to the sternum then the arteries and the nerves lay over the top my nerves and veins where really compressed. I'm going to have my peck minor removed as well its a simple outpatatient procedure. They make a small cut go under peck major and cut the tendon as it inserts into the shoulder. It is a 2nd entrapment point people don't often know about. The surgeon has gone back in after others to finish or fix what they started or screwed up. Also they should have remove his anterior and part of the medial scalene muscle hope they did. If the scalene are in spasm they insert into c5 -T1 go under the collar bone and pull up on what's left of the 1st rib narrow the space and put pressure on the nerves causing the headaches (mine are gone). Try trigger point to release peck minor it might help but it sounds like they only did half the job... Good luck PS my attitude and symptoms were the same and he said I was on my way to loosing function in that hand I was dropping things all the time and the fat pad and curvatures in my hands were very atrophied on one side. Don't be stupid the nerves can get permenatly damaged. Hope this helps!
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    • Posted

      CanadianRN who was you Surgeon in SouthEast US? Did you have nerve pain or arterial issue? I'M JUST FIGURING OUT THAT THIS IS what i have after a skiing accident in Febuary. Exercises and stretches are helping but I think for full relief surgery may be needed. 

      Thanks you

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