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Finally diagnosed with scoliosis, now what?

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  • Finally diagnosed with scoliosis, now what?

    Hello,
    I am almost 40 years old and after years of going to the doctors for back pain and getting "poo-pooed" about my pains, I've finally been diagnosed with scoliosis. How bad I do not know, I just know I hurt. My doctor immediately sent me to an osteopathic doctor for some manual therapy. That has not helped at all. Where do you suggest I go next? I've been going to a chiropractor for 20 years, I've had acupuncture, I have been to physical therapy many years ago, I have been to a biofeedback specialist, I use pressure point massage and a tens unit....all without any relief of my symptoms. My doctor is suppose to call me today and we'll discuss what my next step is, but I am having a hard time figuring out what I'm suppose to be doing. From what I understood, she mentioned before that physical therapy would be my next step and I am frankly uninterested in that. Been there, done it, and it does not help. Please, if you know what I should do next, please give me some advise. Thank you very much!
    LucyBoo

  • #2
    It sounds as though you have been through all kinds of treatments from all kinds of practitioners except an orthopedic surgeon. To find out your degree of curvature you'll need full spinal xrays and measurements taken from them to determine your degree of curvature. Depending on your health care system/plan you will likely need a referral from whoever diagnosed your scoliosis to an orthopedist specializing in adult scoliosis. He/she will take it from there. Good luck!

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    • #3
      Thank you LabDog. I will ask my gp to send me to an orthopedist today. I have had a set of xrays done but from what I've been reading they should be done while I'm standing? I had xrays taken while laying down. Does that make a difference in things?

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      • #4
        Lucy,
        Why in heavens name haven't you seen a orthopedist?? You need to be seen by an orthopedist that deals with adult scoliosis patents. There is a great list of ortho's on this web site. You might look to see if there is one near where you live.

        Being stuck with needles/massaged/"cracked", and "buzzed" with a tens will only temporarily give some relief of the symptoms. It would not do a thing for fixing the problem that is causeing the symptoms.
        SandyC

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        • #5
          Thanks. I have no idea why the doctor didn't send me to an orthopedist right away. She seems to want to try alternative therapy first which to me seems like a waste of time being I've done it all. I also have fibromyalgia and I honestly didn't know if I had true back troubles or if all of my pains were caused by the fibro. You'd think after 20 years of doctoring that someone would have found the scoliosis before now. It's so frustrating and sad. I recently found out the source of my headaches I've been dealing with my entire life too! My neck has no curvature at all. Hopefully the orthopedist can help me with that too.

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          • #6
            Originally posted by lucyboo
            Thank you LabDog. I will ask my gp to send me to an orthopedist today. I have had a set of xrays done but from what I've been reading they should be done while I'm standing? I had xrays taken while laying down. Does that make a difference in things?
            Yes, scoliosis films have to be taken when standing. Most curves flatten out considerably when you lay down.

            Be careful about dismissing all non-surgical treatments as useless. I also thought PT was useless until I found the right therapist. It made a world of difference.

            --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

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            • #7
              thanks for your advice. Maybe it would just take the right physical therapist to help. My experience was that it just seemed a thing to pacify me. What kinds of things helped you during physical therapy and how long did you go?
              Thanks for the information on the xrays too.
              Lucyboo

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              • #8
                Hi...

                My physical therapist evaluated the strength of a bunch of different muscles on both sides of my body, then came up with various exercises. Probably the most important was developing core strengthening exercises to take much of the weight off of the muscles attached to the spine. I probably went 10-12 times, and have been doing daily exercises ever since.

                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


                • #9
                  Thank you Linda for the information.

                  I will now be starting some physical therapy plus will be going to a orthopedist soon. Just waiting to hear now when my appointments will be. I'm sure I'll have a ton more questions as I start this whole process and I'm thankful this site is here with great answers.

                  Thanks everyone.

                  LucyBoo

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                  • #10
                    hi there, i've been through the same thing. i started getting pains in my chest and back when i was 11. unfortunatly because the scholiosis looks mild it was missed and the doctors told my parents i was a hypochondriac. i have seen hundreds of doctors and before being examined each doctor had read the notes of the previous doctors and unwilling to undermine fellow gp's oppinions gave me the exact same diagnosis that it was all in my head.
                    this was very frustrating and even at 15 when my ribs began to show a noticable deformity at the front i was still given the same answers.
                    my family were encouraged by the doctors to be sturn and i had no where to turn for support. i dont want to burden you with my whole life story but now 19 years later i have been diagnosed with scholiosis and cyclic neutropenia.
                    the only things that help relieve my back pain are a regular trip to a chiropractor, exercise and most importantly pain killers. diazepan is also very helpfull for those painfull nights that keep us from getting to sleep.
                    dont be sad just get yourself sorted so you can get on with your life.

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                    • #11
                      Hi Purecain, what an absolutely sad story. Honestly I am stuck for words, and so angry for all you have gone through.

                      How terrible to be reaching out to everyone and no one there for you, that breaks my heart.

                      God bless,
                      Macky
                      Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
                      Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

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                      • #12
                        wow first time i've ever had sympathy .... not sure how to react errrrrrr. in my experiance people just dont want to here about it and tell me how lucky i am lol...

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                        • #13
                          Purecain,
                          Thanks for sharing your story! I totally know how you feel. Although I was never called a hypocondriac I felt like the doctors were thinking that. It was so frustrating because I have had real pain for so long. I'm sorry you've been through that too. What I found is that some doctors that I've seen just thought I was looking for drugs. All I wanted was to be diagnosed! So frustrating!
                          I'm still waiting to hear when my orthopedic appointment is going to be! In this area it's kind of hard to find doctors who treat adult scoliosis. Last I heard my gp was still looking. I start physical therapy on Valentines day though.
                          Best wishes to you Purecain, and everyone else too. Thanks for the support!
                          Lucy

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