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Thorasic Outlet Syndrome

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:33 AM in Chronic Pain
I have Thorasic Outlet Syndrome and at my wits end. I am seeing a new pain management Dr on Wed. and would like any information on any procedures, pain medicine, physical therapy etc. that has helped. I've done so many things but nothing is really helping. Any had the rib removal surgery? I've heard horror stories.
Thanks so much -


  • welcome to the club.i have been through the pain management system for my back and TOS .my advice to you is to NOT have the operation unless absolutely nessasary .take good pain killers sleep on a good bed and use the ACTICARE unit on your shoulders for extra pain relief {www.acticare.com} i use oxycontin both for my back and TOS .TOS tens to flare up and die down so when in a flare up just rest and take your pain killers ..i too have the extra ribs {D1} that's D one not D i or D l.. its at the top of my rib cage {and i am male} i hope that you can manage your with drugs and dont have to have surgery ..as i have heard terrible things about it and i have been advised NOT to have surgery ..i have already had surgery twice {and may require a third on my lower back] ..do try the acticare it will help you .
  • Cyndi,

    I responded to your PM as well but I'll post this also.

    Surgery is only required in certian cases of TOS, mainly when there is a vascular blockage of some kind or when all conservative measures have failed. TOS can cause blood clots which can be life threatning and needs to be taken seriously. I disagree with Straker (no disrespect intended) in the statement that TOS comes and goes. It may in a few but in most cases it is a progressive disease.

    The rib resection (removal) isn't only done for those with an extra cervical rib, it's also done when the scar tissue has blocked the pathway for the blood flow to the arm. I did not have an extra rib but had the rib resection. It was probably the easiest part of the surgery and the rib is only about 2-3 inches long.

    Like I stated in my pm to you mainstream physical therapy can make TOS much worse! I once again urge you to see a specialist and follow their course of treatment. They can and will work in conjunction with your pain management team to make your life with TOS as bearable as possible.

    All the best,
  • strakerstraker Posts: 1,851
    edited 09/04/2016 - 7:51 AM
    professor  my TOS specialist {i am sure its OK to mention him as there is no slander or place of work mentioned?}has told me that my TOS is in remission at the moment ,so i assumed from that ...that in layman's terms its would appear to come and go .i know that it had not gone away {like my chrones disease ..that too is in remission }.i just wish that my back would go in to remission!
  • Hi Im not sure whether I am too late or not to reply to this. But I have just had the surgrey to remove part of my cervical rib and damaged muscle growth around it as well as decompress the nerve, artery and other nerves. I was born with 2 cervical ribs on each side and unfortunatly was not able to under go any over treatment but surgery. I have surfered in Chronic pain for 5 years and due to mistreatment from doctors who said I was making the pain up I was too late as the sypmtoms had got that worse that I was loosing the use of my left arm.

    I cant truely say that surgrey wasnt a horror, and although my scar is a lot longer than I hoped for, Im feeling better now and can feel my arm again. I still have weakness and pain but I am due back in hosptial in the New Year to undergo further tests on my right side to see what action needs to be taken.

    I really hope your pain has weakned down and all of you are having treatment. I hope that you dont have to have surgrey, but if you do, its not the horror story that you have been told. Its like every other operation, there are always risks, but I feel happy now knowing that I wont loose my arm and Im recovering well and hopefully one day wont surfer with pain. Best Wishes to you all xxx
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