TOS surgery

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I'm due to have a first rib resection next week and I'm really looking forward to getting better but I don't know much about the surgery. I havent really been told risks or what will happen afterwards.

?Any information would be a massive help.

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  • Posted

    Hi Holly, 

    You dont really give much inormation about what type of TOS you have as this will affect what kind of post operative course you will have.

    Is it venous, arterial or neurogenic TOS?

    Good luck in the meantime.

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    • Posted

      I was only told by my doctor that i have TOS, he did not go into detail about what type. However, I believe that i have both venous and arterial TOS.

      ​I had a doppler ultrasound which demostrated that the subclavian vein and artery are being compressed in certain positions. Also, my doctor has mentioned the pain that i am feeling is due to my nerves being compressed so this makes me think i also have neurogenic TOS.

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  • Posted

    I won't lie to you it will hurt but worth it , you will have to move slowly and you will turn with your head rather than just your head turn but it's not for ever ,you will be fine I've had three removed and two ribs from my back ,just take it easy and don't stop moving ,get yourself a good pillow only one ,dunlopillow on line it's really soft foam with holes in about £27 but worth it

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  • Posted

    I hope you are feeling confident about your procedure, and if you have already had it all went well.  I had my FRR last July, but had subclavian thrombus in September 2015, loads of PEs, so they didn't want to remove the rib to resolve the problem.  I was in a very bad way and the TOS got progressively worse with arterial and nerve compression.  By the time I had the op, I had nearly lost use of my arm, and I was not happy.  I didn't get much info on complications, but would have consented anyway as I was in so much pain. I basically slept upright for over a year, and just needed some relief.  I had just about every complication you can imagine post op.  Mr Thompson at Exeter RD&E did the procedure, and whilst he is technically excellent, he could do with some humanity lessons....I had hospital acquired pneumonia, a huge blod clot in my chest (they took the chest drain out way too early after my op in my opinion), and was in hopsital 10 days post op for pain management which frankly didn't help.  Then I developed a terrible inflection about 2 weeks post discharge when my wound opened up and over 2l of fluid was drained.  I was near septic, and was on some powerful antibiotics as an inpatient which made me very ill.  Somehow in that mess they didn't realise I had a lymphatic duct tear and was draining raw lymph into my chest.  Partially collapsed lung and another two seperate admissions.  I am a shell of the person I once was and am only now trying to get some of my life back.  I finally have nearly full range of motion in my arm after spending several thousand ££ on private physio (NHS had no idea how to help me and hurt me twice so I didn't feel it was worth the risk). 

    I'm not trying to frighten you with this post. On the contrary, I'm hoping my bad experience informs yours.  If it doesn't feel normal post op, it isn't.  Ask zillions of questions, never take no for an answer, and insist on the care you feel you need.  I wish I had.  I've learned a huge amount from this - some of which I wish I hadn't, but I'm here, I'm alive, and my arm was saved.  I still have chronic lymphoedema, and recurrant pain, and I don't know if I'll ever be able to cave and rock climb the way i did before all this happened, but I'm finding my way in this new life with this new body.  I hope you don't have any of the problems I did, but please don't ever feel bad about asking your medical team if you have any concerns.  You just may save yourself a lot of longer term problems.  Good luck and keep us posted on how you get on.

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