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  • Where do I start?

    Hello everyone,

    I am new to the forum. You all have inspired me to take ownership of my health.

    I had the top half of my back fused with two rods in 1995 (I don't know the specifics). I was 15. I didn't have any major problems with it until last year.

    I started having very bad pain in my neck, left arm, and hips. So I started to get massages and go to a naprpath, who gave me adjustments. The pain disappeared until the next time I got stressed and my muscles tightened up. A few years before that I would get pain in my back and bulging muscles. I went to a chiropractor who told me a rib had popped out. He put it back and I felt better. I had no health insurance at the time.

    Well with the pain in my joints my primary care physician last week suggested I get x-rays to see if I had arthritis. I got the x-rays and asked the technician if I could see them since I hadn't had x-rays in 8 years. I was shocked to see that something had broken loose from one of the rods and there were jagged pieces sticking out. Also my curve looked worse than I remembered.

    The tech suggested I get my original x-rays from my surgeon. I called to get the x-rays but they don't keep x-rays past 10 years. I'm waiting on the surgeon to return my call once they locate the case notes.

    I called my primary care physician to see if she'd seen the x-rays yet and to get a referral. She hadn't and her nurse told me it would take up to two weeks for her to get a report from radiology. So I decided to do some research while I wait to hear. that's how i ran across this site.

    I am terrified. I am a very active person, I dance (egyptian style) in a dance company, I work full time and part time, I attend grad school full time, i'm starting a new internship. and i'm preparing to move to New York in 6 months. If I have to have a revision it will postpone my plans for a long time. Being so afraid has made my back tighter and now i'm afraid to get a massage or go to the naprapath (if something is sticking out with jagged pieces I don't want them to aggravate it accidentally).

    I don't want to have to take pain medicine everyday. I'm into natural medicine and pain meds don't correct any problem, they just mask symptoms. But if the pain continues i'll have to take something if i can't get an adjustment.

    I don't want to interfere with school, I finish in 12 weeks. I don't want to have to stay here in my low paying job once I finish school, just to keep the insurance. I don't want to not be able to dance for 6-12 months of recovery. I know that my back is very important and being that i'm only 25 at least it'll be easier to heal than if I were 40.

    I just don't know what to do, where to look, or what to ask. What's worse is that my doctor and the surgeon who performed the surgury all those years ago are not taking this particularly seriously. It's this a dangerous way to be walking around?

    Where do I start?

    Rakgirl

  • #2
    Rakgirl I completely know how you are feeling! I am pretty much in the same position, a state of limbo, waiting for answers. My GP knows nothing and the doctor who did the original surgery only works with adolecents so I cant see him. I too am very active and have completely stopped what I do in fear that I will paralize myself if I move the wrong way.
    It sounds like your on the right track, gathering information and getting a refferal to an Ortho Doc. Unfortunatly we just have to wait it out and try and put the worrying aside until there is concrete information.

    Good luck! Hang in there.

    Comment


    • #3
      Hi Rakgirl...

      First, a broken rod is certainly troublesome, but it's not an emergency. You need to get referred to a specialist who has a lot of experience in treating patients with prior scoliosis fusions. Where are you located?

      --Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • #4
        thank you

        Thank you for replying to me. I'm in Chicago. I'm glad to hear that you don't think it's an emergency. I feel a little better. Do you think I can still dance?

        Comment


        • #5
          we'll hang in there

          I guess we just have to hang in there for sure. I have a hard time avoiding activity. I will take it easy tho but I've found that smooth movements help my back pain and my hip stiffness. Truthfully I will probalby keep moving but lifting is one thing i'll stop.

          Comment


          • #6
            Hi....

            I honestly don't know if there are any potential risks to activities such as dance, with a broken rod.

            Here is a doctor who probably has the appropriate experience to treat you:

            http://orthodoc.aaos.org/MatthewHeplerMD/

            When you move to New York, your best bet would almost certainly be:

            http://www.hss.edu/Physicians/Profil...-Adjei-Oheneba

            I hope you're able to get an appointment, and that you'll post an update once you've seen someone.

            Regards,
            Linda
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment

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