TOS Cervical Rib Removal and First Rib removal

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I (have) had Thoracic outlet syndrome. It took approx 8 years to figure out what I had. Finally found a doctor I could agree with. He found cervical ribs both right and left. Only had symptoms on my right side. Pretty sure symptoms were brought on by a car accident (whiplash). Anyway.. Had the cervical rib removed and the first rib removed along with the skaleen muscle that was in a spasm. It has been 5 weeks and I am still taking pain meds, although I am finally starting to feel some relief. Not ready to quit the pain meds though. Although I'm gonna have to since my dr wants me off them. Wish he could feel this pain.My chest is numb but it is painful underneath. It burns like heck and the muscles, or it may be the facia that runs from my neck to my chest that is so tight it kills me. I try to do my stretches but it hurts. Mornings are awful. Be prepared to not sleep at first. I am thankful to have found this site. You feel like you are the only one out there who has been through this since it is such a rare anomaly. If you are going to have this surgery perpare yourself for not only the pain but the mental challenge of being in pain for so long. You will have some really down days. Good luck

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  • Posted

    It does also vary with the type of tos you have. Recovery from neurogenic can be harder as nerves are delicate and can take a long time to heal. My nerves were pulled tight over my extra rib and attached and intertwined with it, so they had to be cut away etc... I've read arterial alone has the best outcome I seem to recall 👍

    Also as to why you have it. If you have an obvious obstruction you are more likely to have a good outcome.

  • Posted

    Hello.  So glad i just found this site, however, I'm a little scared after reading some of your posts.   I have been suffering for over 5 years with TOS - but the last 6 months have gotten unbearable.  Finally saw neurologist and then vascular surgeon.  Was just told today that from the looks of the bilateral cervical ribs, they want to do the surgery to remove cervical and first rib on left side.   I know recovery will be tough, but do you guys find it was worth doing the surgery?  I am reading many of you are still in a lot of pain.    Thank you, if anyone has any information.  
    • Posted

      Hi Corrine,

      My TOS was from a football injury about 9 months ago. I was told that whenever I lift my arm above 90 degrees, I lost complete blood flow to my left arm because my rib pinched my artery. After 8 months of waiting I was finally able to get surgery ( about 4 weeks ago). My surgery was over 5 hours long. They removed the first rib and checked to make sure my arteries were stable. By the time my surgery was complete, I was up and out of the hospital within 24 hours. However I felt no paid at all in my shoulder because they had stretched out the nerves in that area making a large section of my should completely numb. It is still numb and will be for another month or so. Its been almost 5 weeks now and my doctor said i should be able to start lifting weights again in two weeks. As a result of the surgery I will not be able to play football for my senior year but it only took me a week recovery until I was back in school. Compared to everyone else, my surgery was perfect. If you have any questions in particular you'd like me to answer about the surgery, you can email me at nathan.widiker@birchwood.k12.with.us I would be more than happy to help you and set your mind at ease about the surgery ☺

    • Posted

      Thank you, Nathan, for your sharing your experience.  I'm told mine is the neurogenic.  I'm glad it sounds like you had a successful surgery.  I'm in so much pain now, i cannot imagine there be more pain after i'm fully recovered, as it sounds like some have stated.   If I have further questions for you, I will let you know.  Thanks again.
    • Posted

      If I could do it over again the only thing I would do differently would be to get a second opinion. I had no chance of it getting better with the extra rib & I would have gone with surgery every time. But that depends on individual circumstances.

      Also remember that boards like this will have a higher portion of unsuccessful surgeries as those that are successful have little need for such boards. In another support group im a member of successful surgeries often disappear as they no longer need the support of the group and the pain is no longer consuming their life.

    • Posted

      Thank you. Very helpful. Appreciate the point made about posts in the group!
    • Posted

      Hey Jopo.  Just wanted to check in with you.  You recently mentioned giving me a list of things i might need at the hospital?  I was wondering if you could let me knwo, when you had a chance.   Greatly appreciate.  
    • Posted

      Worth it ten months later! Still some residual numbness but all blood flow restored. A tough procedure but it does work!

       

  • Posted

    Thank god you posted this. I am exactly a week past my surgery and was really getting concerned until I read this. Exactly the same symptoms. My neck is as hard as a rock and the pain is awful at night and in the mornings. I'm hoping this feels a great deal better by next week. I didnt think it was going to be this drastic. A lot more recovery than I originally thought.
    • Posted

      Recovery can be quite long, it's major surgery. From experience surgeons really don't tell you much about the recovery.

      But you should find yourself feeling a bit more yourself in a week.

      I found sleeping in a hospital bed with the head quite raised easiest for the first three weeks but most don't have that option for such a length of time! But others find recliners easier than the bed or propped up with lots of pillows.

      I found sitting under a hot shower helped (when I felt able) & make sure you have adequate pain relief, another thing in the UK seems to be to send you home without adequate pain relief... So if you have none or feel it's not enough ask your Dr.

      As for nerve recovery (if you sufferered with nerve symptoms) you need to wait 12-18 months before things start to show real improvement depending on the severity of the compression and damage.

      Sending healing thoughts your way.

    • Posted

      I thinks that's where I'm going wrong. I'm trying not to take pain meds as much as possible. Trying to save them for night because of their side effects and how bad they are for you. I think that might be a mistake since the days seem so long with the pain. Also the shower definately feels like it helps. Did you have pain by your shoulder blade? That seems to be the worst pain other than the tightness in my neck and chest. Or not sure if that's the after affects of them puncturing my lung. Last night on night #7, I finally had relief for about 5 hours which made me optimistic. But then ended up in total spams after ad hurting again. 
    • Posted

      Yes really should keep on top of pain meds for the time being.

      There will come a time when you won't need them, or as many or a different type (depending on the outcome), but it isn't now, & that's ok, that's why they are there. Recovery will be easier with less pain.

      They won't have a huge impact on you the short term (you mentioned how bad they are for you) & as long as you taper off them when you are done, then it shouldn't be too hard to come off them.

      Above all, take it easy, recovery is hard. Pushing yourself or doing too much can be detrimental, this period is important for not building scar tissue.

    • Posted

      Thank you very much. It's a much slower process than I thought it would be. 

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