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TOS getting bad can not even lift my arms to do stuff..

hisbeauty4asheshhisbeauty4ashes Posts: 210
edited 06/11/2012 - 8:28 AM in Upper Back Pain, Thoracic
Hi my friends,

I can not begin to tell you how much pain I am in. I can hardly move my arms now and I know the weather outside is wet and cold that seems to increase the pain. Man I have a friend coming over just to help me with laundry and other things. I went to physical therapy today and they told me he can not start doing physical therapy on my neck because of the TOS. So now I will get more tests and see what we can do.

I am so not a drug person if anything I am one who has to be overwhelmed with pain to take the pain meds. Well today I put my Phentonal patch on cause it was so bad.

I do not like my life right now.



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  • Hi

    I am just today learning of TOS. I had a thoracic spine injury 3 years 4 months ago. Told it was a compressed t8. Been at a WCB review board meeting yesterday and began reading my file. One therapist mentioned last August in a report that I may be experiencing TOS. Now I need to find out more about this issue. I definitely have numbness and tingling on my right arm. It happens during sleep and with more intensive exercise therapy it was starting to happen throughout the day. It was getting so bad that I could not even write a cheque. With rest and avoiding those exercises, I have eased the amount of numbness and the frequency of the episodes.

    I need any info that I can get in order to understand. Testing, treatment,anything that relates.


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  • Hi, I'm sorry to read about your pain journey. I've recently had surgery for TOS and I'll try to explain in more detail how it's diagnosed and treated.

    There are several types of TOS. Nerogenic TOS is the most common and is caused by nerve entrapment, usually between the scalene muscles and the first rib. There are people born with an extra rib that often display TOS symptoms. Vascular TOS is where both the nerves and blood vessels are trapped in the same anatomy and Arterial TOS is the artery and nerves trapped. Both the venous and arterial types can be dangerous and can cause serious damage to the affected arm, blood clots or, in extreme untreated cases, even death.

    When TOS is suspected you MUST see a specialist! This is usually a vascular surgeon with a specialty in TOS. It's hard to find the docs and many people have to travel to do so. I urge you to be evaluated by a specialist ONLY. Doctors, meaning well, can do more harm by simply not knowing the intricate anatomy of the thoracic outlet region. For nerogenic TOS there is a nerve block done to the scalene muscle to help determine if there is a blockage at that level. For the other types tests such as venograms and arterialgrams are done to check the level of blood flow to the arm and for possible clots.

    I have venous TOS and had a blood clot when I was diagnosed. My arms that would go completly dead and be useless for up to an hour at a time. I also had constant pins and needles and tremendous nerve pain. I had surgery on my right side which entailed removing the anterior and median scalene muscles, a first rib resection and a tremendous amount of scar tissue removed. Unfortunately, my recovery isn't going well and I have lost most of the broad use and strength of the arm and most of my fine motor skills and also developed a winging scapula. However, had I not had the surgery I may have died from a blood clot.

    It's a complicated situation, as you can read LOL, so feel free to PM me if you have any questions. It may take me time to get back to you but I will, I promise.

    Take care,
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