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diagnosed with Thoracic Outlet Syndrome

AnonymousUserAAnonymousUser Posts: 49,670
edited 06/11/2012 - 8:33 AM in Upper Back Pain, Thoracic
I've been trying to get better for 2 years with conservative therapy. The condition has just gotten gradually worse. It went from simply chronic inflammation pain to much worse neurological symptoms such as muscle spasm, Electric shock, Blood vessel pinched numbness. I don't feel the pins and needles that much yet but it is beginning to happen as well.

For anyone who has gone through the hell of diagnosing this condition while trying every conservative therapy possible and all ending in failure. What did you do next?

I read that this is very rare and that surgery is very high risk with potential extreme complications. Should I just accept it and give up on trying to fix it. It has taken over my life everything is on hold, I'm obsessed with finding a cure.


  • I recently went through TOS surgery. My journey between diagnosis and surgery was very short however. I had almost no blood flow to my arm by the time we discovered the problem and there were no conservative measures to try at that point.

    The surgery was a long process but the initial healing was okay. I have had a lot of complications and you can read about them on my post on this section of the forum. What I went through is NOT the norm by any means! Most people get relief and heal just fine. You're right- it is a complicated surgery and should only be performed by a highly qualified vascular surgeon. I'm going to post a link here to a message board that deals with TOS; They have a list of surgeons on there who have experience in these surgeries. Many times people have to travel to get the surgery.

    Please let me know if there are any specific questions I can answer for you. I'm a post or a pm away.


  • Basically, if I let the shoulder drop too low it aggravates it. If I pull my shoulder back from forward position it goes from 3/10(with pain medication) to instantly 10/10 pain. If I raise my arm above my head my arm goes numb.

    The stretches it recommends at the bottom of this URL those cripple me for 3 days even if i do them lightly

    Basically my Shoulder/neck muscle gaurd by shifting up & forward and becoming extremely tight.

    All those conservative therapy that relax/stretch muscle do is escalate my symptoms to the extreme, and then muscles just retighten back up within days, tighter then it was going into treatment.

    The thing that makes my symptoms the worst is sex. Orgasm causes all muscles to contract and then relax then symptoms get extremely bad the next day.

    Just last night I had to go to the emergency room because my entire body started shaking it was like I couldnt fully control my body, nerve impulses firing every which way making me very jerky. This is the first time I felt spasm in my neck spread to entire body which freaked me out and I woould just randomly burst out crying from feeling ok seconds earlier, the waves of emotion were intense. My leg/foot started feeling sciatic pain.

    I wish I hadn't gone to ER however they were useless. Telling me chronic pain I should see family doctor and all they can do is give me pain medication.

    I'm still shaking very lightly at a fast constant pace right now.
  • I'm a little confused by this TOS stuff. Besides my neck and lower back issues, as seen below, I've been dealing with thoracic pain for over 3 yrs now. That's where I all started and how I found out about my neck and lower back. Anyway, in 2006 I had x-rays done of my thoracic area. I guess they found bone spurs, which I wasn't told about until 2 yrs later. I got another set done when my neck started going and nothing was seen. Not sure where the bone spurs went, I guess they can break off. Anyway, I have a constant burning pain in that area, mostly where the bra line is. Sometimes I wake up cause my arms are numb and hurting cause I had them over my head in my sleep. Leaning my head on my hand makes it go numb. My shoulders are very weak and hurt a lot. I can't lift more than 10 lbs without them burning and hurting. I know you aren't docs, but could it be that I have something like that with what I have described? Another frustrating aspect of my spinal issues is that no one has told me why or what is causing my thoracic pain besides maybe I have arthritis. Just wondering if maybe this could be my answer. Thanks.
  • Hi Brandy,

    I have recently learned that bone spurs usually don't cause pain. We get them because it's our bodys' defense mechanism to grow more bone when there is a threat or injury to the particular area. I had bone spurs on my feet when I found out I had planters facaiatis and all the inflamation and strain was causing the extra bone growth as the body was receiving signals from the brain as an alert.
    Something like that.
    Every little bit of info helps I guess huh?
  • Thanks for the response. From my last set of x-rays the spurs weren't even mentioned so not sure I have them anymore. All I know is that I get a lot of burning pain in that area and my arms and hands go numb a lot. Maybe just more issues from my neck. It's just weird to have pain in an area, but not have any reason of why I'm in pain.
  • TOS can and does cause a lot of pain in the thoracic area, especially around the scapular area. It can also cause pain in the front of the chest, under the arm, in the arm and hand, in the neck and, seemingly, anywhere it damn well pleases!

    Since my decompression surgery I can say that my thoracic pain has gone down a bit. Not enough to play basketball but enough to notice. Activity of any kind sends it right back up though.

    Fun, isn't it?


  • it took over two years for me to get my TOS diagnosed ..at the moment {28july 09} i am having a TOS flare up i think its because of the swimming i have been trying to do to help with my back problems you carnt win..!! unlike griff i have not had surgery and i hope that i dont have to ,i found that the tempur millenium queen pillow was excellent for sleeping for some one with TOS or any other neck problems i also use the acticare and a high strength diclofenac gel rub .{plus the oxycontin that i take for my back} TOS can be horrible or barely noticeable my TOS is normaly barley noticeable but when it flare up i know about it ,so you have my sympathies
  • I have been told that muscle spasms can occur when something IS wrong( whether they know what or not) as a defense to protect the area that's damaged.
    I've never heard of spurs disappearing.
    As to MRI's they don't show the whole story, I had bulging disc and spurs in disc and MRI showed that it wasn't that bad...long story short my Nero is a great listener and I told him it was so bad so he went ahead with surgery and said when he got in there it was way worse than MRI showed.
    I would push hard to make them listen.... Some drs just don't.
    Push whoever it not listening to freaking listen.
    U know there something wrong and they need to get with the program.
    Don't give up!!!
    Good luck and we here in the SH family of spineys understand and are here for u!
  • Just in the very very beginning stages of TOS. Waiting to see a doctor that specializes in this. I was having some issues with my arms, shoulders, neck and down to my finger tips hurting. Just took it for granted it was my fibro. plus I had an ACDF C5-6 done. I had post op xrays done before a surgery a month ago and the radiologist, anethisologist and my gyn doc that did my surgery found TOS on my xray. I'm going to see a Cardiovascular Doc up at Cleveland to see if there is much to this and where we need to go if it needs fixed. It has me worried due to the strange feelings I get in my hands/fingers they will turn blueish and very cold (hurts bad) or even pain in my chest that wraps up into my armpit and into my shoulder blade back up to the neck ............ just wish symptoms were not so related to other illnesses just makes it more harder to figure out what came from where.
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