Friday, January 27, 2012

Take My Hand

TOS is full of surprises, such as the one in the picture. Last night, while I'm sitting on the couch, watching a movie with my daughter, I look down at my hands and see this: the left hand is sickly white; the right hand is swollen and red. The reason I looked at my hands is because my left hand was freezing, and that's what usually happens with TOS - very cold, sickly white fingers on one hand (or both), maybe just one finger (or five, you never know), occasionally juxtaposed against the other hand, with fingers that might be red and swollen (as above), or simply blue and scary, because blue body parts are a sign of poor circulation, lack of oxygen, and possible danger.  This happens frequently enough that I no longer panic when it does, but it sure shocks other people who catch sight of it. And no, it's not Raynaud's Phenomenon, which can occur with TOS.  I saw an Independent Medical Examiner for Worker's Comp several times who insisted I had Raynaud's.  I finally had a full rheumatological workup and the finding was TOS, not Raynaud's, was the cause of my discolored fingers. So, the colored fingers can show up at any time, during any activity, but often when I'm resting, and even more often when I'm working on a computer (like now, and the right hand is freezing), because the thoracic outlet is constricted by the position of my arms.  Changing position or activity will usually make it go away, which is why this post ends here.


  1. Hi Marianne! I am sorry to hear that you are having such problems with your hand and arm. I had the same problem with my hand before I had my TOS surgery because I had not only blood clots all up and down my main artery in my arm but the huge aneurysm in my sublavian artery. It was due to the bloodflow being cut off mainly in my subclavian artery and secondly in the artery in my arm. Four months After my TOS Surgery, I am still having problems with my thumb, index finger and middle finger. They get EXTREMELY cold and turn purple at times. They also hurt quite a bit upon impact(Nothing as severe as the horrible PAIN that I had before surgery, but still significant. My surgeon says that it is a form a Raynaud's, but mainly caused by residual blood clots that still remain in my fingers and that they will "work themselves out" and "it will just take time". In the mean time, no pun intended, my fingers constantly hurt, more so when I am at work on the computer (I am a Graphic Designer so there is no way that I can avoid the mouse and keyboard) my fingers keep turning purple, and I have wrist pain that mimics carpal tunnel syndrome.

    My problem is that my surgeon's office has taken me off of Coumadin(the blood thinner that they had me on), which I think does not help the blood clots in my fingers work themselves out because my blood is thicker and I feel that they can't work themselves out as easily if my blood is thicker. So I am still having problems and I talked to my surgeon's office today and they referred me to a Pain Management Specialist. So they have basically discharged me from their care and want me to follow up with a pain management specialist if I have problems from now on. So I feel some of your pain and frustration.

    1. Hi Ray. Sorry to hear about your troubles. Hopefully, things have improved. Do you have a primary medical doctor you can consult about the blood clots? That is not a pain management issue. A medical doctor can prescribe Coumadin if necessary. And yes, the surgeons discharge you as soon as their job is done. Where are you writing from? the States? So many of us suffer because of computer-based work. If you cannot configure a workstation that doesn't cause harm you will not get better. Sad to say, but you may have to rethink what you do to make a living. I did, and it hurt, but I am in a much better place, and in less pain. Please keep in touch.

  2. It was so nice to meet you at the Writing Conference yesterday, and then to begin to read through your marvelous, informative blog. Thank you for sharing it with me. I've alsready subscribed to it.