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Thoracic Outlet Syndrone-Revisited

griffggriff Posts: 496
edited 06/11/2012 - 8:26 AM in Upper Back Pain, Thoracic
I had my consultation with the Vascular surgeon today and I got a lot of answers and have even more questions LOL. he definately thinks that I have TOS, caused by the severe whiplash I recieved in the accident. His theory is that I tore the muscles that surround the thoracic outlet nerves- there is no sign of any arterial involvement- and that the scar tissue and consequent muscle spasms are causing the problems.

His suggestion is that I try a very specific course of physical therapy and have an injection of the muscle involved, which will tell him if it's really the problem. He's not terribly hopeful that the PT will do much because of the severity of the injury but said it's worth a try. If all else fails he talked about surgery to remove the muscles that surround the nerve bundle. Apparently these muscles aren't important for structure or movement, especially because I'm fused.

He, like my neurosurgeon, doesn't believe that this is the only problem that I'm facing and is not sure just how much relief I'll get even if the results are perfect because we simply don't know how much of this is coming from my spinal problems. Therein lies my dilemma- is it worth another surgery? It's just over a year since my first surgery and 7 months since my last one. I'm in more pain than I was to begin is with and am, with reason, a little gun shy about going under the knife again.

Any feedback? Has anyone had this surgery? HELP ME!!!



  • I was recently diagnosed with this as well - found this board through a search engine. Please let me know what you find out, I'm desperate for more info as well.

    Please remove the URL in your signature line. Spine-Health does not allow solicitation.

    Ron DiLauro, Spine-Health Administrator 02/02/09
  • I recently had a turn of events which has forced my treatment along much faster than I thought it would go. I have a post under Back and Neck Surgeries titled "Procedure on Monday with Surgery to follow soon. It would be too hard for me to retype all of it here LOL.

    Feel free to ask any questions and I'll answer what I know. It's pretty new to me too but I'll do what I can.

  • what were some of the symptoms or signs regarding the tos? pfm
  • dilaurodilauro ConnecticutPosts: 9,859
    I cant speak for everyone, but when my TOS starts to act up, I will get a burning sensation on my back around the T2 to T3 levels. Then I would have a numbing, tingling sensation going down both arms, and one hand would go numb from time to time during the day.
    I think the biggest difference with TOS vs a pure Thoracic disc herniation is that both arms are affected. Normally with discs, the problem concentrates in one area (right arm, right two fingers, etc)
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • TOC could be on one side only if it is related to a specific injury? Say a broken clavicle of the area on one side that either directly injures the veins and nerves or the resulting bone growth applies pressure? Am I way of base here?
  • Here's what I have learned:
    There are many ways to get/have TOS. Sometimes it's structural, meaning that a person is born with an extra rib which entraps the thoracic outlet structures (artery, veins and nerves)and that can happen on one side. Mine obviously is traumatic and I have symptoms on both sides although the arterial type only on one side- for now anyway. Traumatic TOS can happen on one side only as well. My surgery is focused only on the right side where I have arterial TOS and it will also take care of the nervogenic entrapment as well.

    Baffled, I have had symptoms that were consistant with my spinal injury and nerve damage there too. The difference with TOS is that it is positional- I can't raise my arms or do anything with my arms forward. The arterial or venous types will cause swelling in the hands or arms and/or discoloration in the skin. My right hand swelled to 3 times it's mormal size and didn't go down with anything I did. Both types make my arms go numb and the nerve entrapment causes severe pins and needles and pain in my neck, shoulders, arms and hands.

    It will be interesting to find out how much of my arm pain is coming from the TOS and how much is left from my cervical problems. The surgeon, of course, isn't promising hope for pain relief but is trying to save me from a blood clot or losing use of the arm by doing the surgery. Nervogenic TOS isn't repaired by surgery but can be greatly helped by PT.

    That's what I know LOL. I'm happy to answer anything else that I can. This has been an interesting, although scary, experience and I'll share the knowledge I glean from it as much as is needed.


  • thank you for the explanation - you did a very good job! I wish you luck with the surgery and maybe it could help to ease things for you

    That had to have been scary to have your hand swell up like that!

    Take care and keep us all posted.
  • Thank you! That is what I was thinking. I could not say it near as well!
  • I hope that answered some questions. I'm learning more each day and am awaiting a phone call from a former patient of my surgeon's to find out more about the actual surgery. I'll let you know if I get any information worth sharing.

    I appreciate the good wishes, they always help!

  • hi griff i have sent you a pm but looking at rons TOS we have the same type of symptoms
  • Do any of you get burning from your parital area of your head to your neck? I know this is specific but I am having burning pain in these areas. Just for about a week. Nothing like the nerve pain I get down my arms. I am thinking nerve pain also includes burning?

    c4-5 minimal bulge, c5-6, c6-7, and c7-t1 mild bulges,
    t7-8 dessication, l5-s1 dessication and schmorl's node.
    Wow this took me longer than to write then the post. HAHA
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