Over 12 years of suffering...now they say wrong advice!

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Hi...

So, I was told over 12 years ago that I had an "extra rib" in my neck. They really had no clue what it was at first. For over a year, they pushed and poked, and probed me. I was suffering from migraines on a continuous basis. I had constant neck, should, and back pain. My doctor finally just sent me to every type of specialist there was. I had specialist tell me that it was unfair for them to even pretend to act like they had a clue what this was. Finally, after over a year or so, I had one of them say that it was an extra rib. That during that time, 12 plus years ago, the surgery was rare and his advice to me was to put off having the surgery as long as I possibly could. I'm from a small country area and that is the advice I was given. My doctor didn't know any better and I didn't know any better, so there I was enduring the pain of migraines, consistant preassure in my head, stiffness in my neck, back, and shoulders because I was trying go as long as I could. When the pain was to much I would have to go to the ER for shots of morphine. The pain just became to much to live with and i told my doctor that something has to happen. She sent me to a neurologist and he was blown away by the "stupidity" of the advice I had been given. He put me on Topamax, which has helped break up the constant pain but I still get the migraines. My surgery is coming up soon and the closer it gets...the more freaked out I get. I was told that the rib is huge in size. I have also been told that because of all the years of growth of muscle, nerve, and tendon around the bone, they will more than likely have to remove some nerve and muscle from under my arm as well. They say I will have to recover from the surgery and then do rehab to learn to use my neck and arm again.

Has anyone here ever heard of this or experienced this type of surgery for TOS? Just wondering about what to expect.

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  • Posted

    When I was 33, living in L:ondon UK< I found a lump in the side of my neck - This was diagnosed as an extra rib growing - Surgery was recomended - I was advised there was a 50% chance my arm would be paralyzed after surgery as nerves were trapped causing numbness in my arm - When I askled I was advised if I did not have surgery my arm would be paralyzed within 5 years - I had the srgery - After surgery I was unable to move my neck or straighten my arm  I had extensive Physio therapy for a year and finally got full movement  back in both my neck and arm - I am now 790 years of age and have never had any problems or after effects from the surgery - It was the best choice I could have made

    L:imeySurvivor

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    • Posted

      Thank you for letting me know. I have been freaking out because so many specialist have been telling me that I was given the worst advice ever back then. They now say that I should have had the surgery immediately, even though they knew far less back then than now. I also suffer from numbness in my left arm and fingers, occasionally down my left leg and foot. I can't lift my left or right arms over my head for any length of time or they go numb.

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    • Posted

      Lmao... I had to actually use my right hand to pick up and raise my left arm up above my shoulder.  Don't focus on some bad advice other doctors may have given you. Many doctor's scope of knowledge is not that vast and this, TOS, is pretty rare. Just be glad you have that knowledge now. There is a great chance they wouldn't have offered surgery any sooner. I don't think people understand how painful and interfering this can be... doctors especially!

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    • Posted

      They forget to tell you if they cut the end of bone off that it regrows so this is why 3 , I've only got two extra ribs but had the right hand side removed twice and it's giving me problems now it's so big I can feel it by just touching my neck , I've now got what doctor called cuff rotation but it could be due to extra cervical ribs , I'm having pain and problems lifting my right arm

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    • Posted

      Yeah...no one has mentioned anything about regrowth. They just told me that they have to cut out my first rib as well so that my chances of having the same issues later don't come back aren't as high....but nothing about regrowth. I can feel the bone just by touching my neck...they claim it's huge...whatever that means. I have been able to feel it for years now. What bothers me is that I have learned more from sites like this than the doctors. Then when I asks questions...it's like an, "Well, yes, that happens because of this or that and what you will need to do is this...and it should not or may not be this or that..." I just don't understand why I am not told upfront about it if you know this is going to be a result of you doing certain things.

       

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  • Posted

    I HEAR you sister! I endured pain for much longer than I really needed to. I had the vascular surgery on my Left cervical rib (resection). It's typical with this surgery (from listening to these boards and watching the surgery online) Don't watch unless you've got a strong stomach. They cut through muscle and chop off the bone bit by bit. I actually asked to keep the bone because i thought it would make for a great sovenier of what I'd endured. No such luck, my surgeon told me that they remove it little by little so they can work with nerves and muscles and cause as little damage as possible in the process. I had the surgery done 3/27/16. The bone pieces are a biohazard and go to the lab for testing? or maybe THEY are making jewlery out of it. lmao!

    Don't be afraid. Surgery is the EASY part. They will put you out before you know it and you will be in excellent hands. Have faith.

    Now, for me personally, I woke up with a pain pump. It was the WILDEST feeling EVER! I guess most people don't tolerate it well. If you get one, KEEP on it! It helps healing. Basically. the pump will be attached about your shoulder and release medication that gives you what feels like a DEAD arm... DEAD... COMPLETELY. It's WILD! I would get up to use the restroom and leave my arm behind in the bed. Using the restroom I was giggling up a storm (my hospital roommate probably thought I was NUTS). My arm kept falling out of it's sling, I'd have to pick it up by my fingers with my other hand and shove it back in. It's cold, and think about when your foot falls asleep and take THAT times 1000! Completely dead. It came off the next morning when I left the hospital.

    I was in class a few days later, just with pain pills. I would suggest going to Physical Therapy before hand just to have some tools under your belt if you find yourself busy or not feeling up to it. My surgeon told me to use my fingers to try to walk my hand/arm up the wall THIS helped tremendously with my range of motion. I had problems raising my arm past my shoulder.

    I'm still a FIRM believer in Lyrica 200mg 3x daily... it's for nerve pain. Gabapentin gave me a Gaba-hangover but some people it works well... also for nerve pain. I take tramadol for the pain but I also have Psoriatic Arthrtis.

    If I sleep on my arm wrong or do something that "irritates" it I will be reminded of SOME of the pain. NOT anything near what I was experiencing. I FEEL and HEAR your pain. It's undescribable and unbearable. I have even slept on the floor (or just rest) which also seems to help. I think it helps to align me? I also have scoliosis and abnormal neck curvature (aka text neck).

    For me the surgery was worth it. I wish I did it earlier and I'm still in awe that at 39years old they just NOW figured out I have 2 extra cerival ribs! My right one is not as big as the left and does not seem to be creating the same issues.

    I hope this helps. Ask me any questions you have. Of course, every body is different but I can at least give you an idea of what your up against. You're not alone either. It's odd but there are many of us out there... there is a FB site too that I'm on! Great place for more information and interactions.

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    • Posted

      I believe that the surgery itself will be worth it. I have spent most of my adult life suffering. When a doctor has to teach you how to smile without tension...you know...to really smile...because even your smile is uptight...well that speaks volumns to how much pain you've carried in your body. To constantly hold your body in a "braced for pain" position for so many years that you actually have to train yourself how to relax is almost funny at times. I actually laugh out at myself because I mentally catch myself doing it and I have these little girl talks with myself to chill out. It's just too funny.

      Thanks for the encouragement.

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