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Arterial thoracic outlet syndrome

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Randy91
Randy91

Hi, my name is Randy and I am new to this. I was diagnosed with TOS 2 years ago and had my first rib resected. Now, I still experience large bulging veins in my arm, especially when I am hot or doing physical activity. With this bulging comes heaviness and engorged feeling as if the blood flow is extremely bad through my bicep, forearm and hand. Can anyone relate to this? I have no pain or restricted motion though. Just a very uncomfortable, almost unbareable swollen feeling and the need to get away and get cooled off from whatever I am doing.

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3 Replies

  • ihavenonickname
    ihavenonickname Randy91

    Posted

    The question is: because you first suffered from a compression between the clavicle and the first rib. you did not have the same feelings as those of us with normal space have.

    So your first rib was excised so that the vein, the artery, and nerve would have full function and feeling.

    Increased blood flow brings increased oxygen and nutrients to the tissues, which increases exothermic reaction.

    It is possible that you have an injuried subclavian artery or subclavian vein.

    The very best person to ask is the surgeon who excised your rib.

    • Randy91
      Randy91 ihavenonickname

      Posted

      Yeah, I have consulted with him a few more times after the surgery and had a venogram. He said there was still blockage on each side of my thoracic outlet in the subclavian artery when my arms are raised. Got a second opinion from Johns Hopkins University and came to a conclusion there is nothing else they can do about it.

      ​I just never understood why I never had numbness or pain. If anything, I lift my arms for relief. So that is why I assume I just had bad circulation now because only heaviness and bulging of my veins occur.  

      ​I did have three small clots in my blood vessels removed when I was 20, located right above my clavicle on my neck. Now, 25, ever since I was 22, my arm started feeling heavy and the veins worsened. I had the rib removed 6 months later.

      ​I am slightly depressed because I cannot live my life the way I want to. I would do anything to fix it, but it is hard to keep going from doctor to doctor spending money. I just want to know for sure that there is nothing anyone can do about it, it would make a big difference in my life.

    • ihavenonickname
      ihavenonickname Randy91

      Posted

      I agreed with you....I want you to hold on to hope...when I was born, you died with the same parts you were born with. but not any more. Medical knowledge is growing exponentially each day. No, today will be yes, tomorrow.

      Johns Hopkins is esteemed...but others are esteemed. Was subclavian shunting ever discussed? What specialty of physicians did you see?

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