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Something is happening and I am having problems getting help in Vancouver BC/Seattle

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  • #1

    Something is happening and I am having problems getting help in Vancouver BC/Seattle

    Hi-

    I am 50 yr old female with mild scoliosis that feels like it is getting a lot worse. I only just found out I have scoliosis. My GP is not very knowlegable.

    Does anyone know of someone in Vancouver Canada? Or Seattle. I know the VGH Spine Clinic is very good but I don't think they treat mild cases? (My GP does not want to send me there because I am not a "surgical candidate")

    I am looking for physical therapy- maybe Scroth.

    Or just someone who is knowlegable- an advocate, someone to help me. The physiotherapsits I have been to to date do not seem to really understand. It's important that I try very hard to do something about this because I am getting radiculopathy.

    A practicising physiotherapist with scoliosis him/herself would be great.

    I honestly feel like something bad is happening to my back- that is is undergoing something. Lots of new bizzarre feelings in my upper back and the sides of my torso. All of this is very new to me and I am looking for answers and help. I saw my brother for the first time in over 5 years a few weeks ago and one of his shoulder blades is protruding where it wasn't before. He is in a lot of pain. He is 2 years older than me. If I can avoid the same fate I would really appreciate it-

    Thank you
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  • #2
    It's fairly common to read that once the age of 50 is reached, scoliosis generally progresses. Lots of us here lived with it without too many problems until that age. It was about age 49-50 that I started to have pain and that pain slowly increased until my surgery at almost 58.

    I hope someone is able to help you with a surgeon's name because you really need to have x-rays and have your situation assessed by a scoliosis specialist.

    Best of luck!
    Jen
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

    Comment

    • #3
      Thanx Jen- yes, something is happening. I am astounded at my GP though- she does not want to send me to a spine specialist because I am not a surgical candidate. I would settle for a diagnosis or a number or something. I would even like to know if it is "real" scoliosis or functional- or neuropathic (from the radiculopathy). I feel really sad and helpless over this. I have had xrays and that is a whole other long post- it's like everyone is playing "stupid", or they really just don't know anything. I was just thinking how weird it is that there are no scoliosis experts around.

      Anyway, thanx for responding and PLease, if anyone knows anyone in Vancouver bC- even a GP who knows something about scoliosis- anyone, thanx

      Comment

      • #4
        I think there are specialists, but the socialized medicine system in Canada has to funnel patients into the appropriate buckets. In other words, there's no sense in sending you to a surgeon if you're not a surgical candidate.

        If you have copies of your X-rays, and can post them here, I can get someone to look at them and give you an idea of what your Cobb angles are.

        --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

        • #5
          Thank-you Linda! Yes, I do have copies of my xrays- but they are separate xrays- 2 lumbar (ap and lateral), 2 thoracic (ap & lateral) and 2 cervical (ap & lateral). The lumbar and thoracic were done at the same time (in the same session) but not on the same film. Will that be ok? I also got a CT scan.

          I got those done through my GP at the hospital radiology lab. They were standing up. I was standing the way I normally stand- which is rotated. So I don't know if I should get them redone, standing derotated? (which isn't that easy but I think it will show more lateral curving). I got a lumbar xray laying down 5 uears ago and it had different results. This is where I just don't understand how it is not done in any sort of thought out way. The VGH spine clinic (where anyone who knows something resides) requires a special set of 36 scoliosis xrays- but again, I do not qualify for that.



          thanx

          Comment

          • #6
            Originally posted by whatishappening View Post
            Thank-you Linda! Yes, I do have copies of my xrays- but they are separate xrays- 2 lumbar (ap and lateral), 2 thoracic (ap & lateral) and 2 cervical (ap & lateral). The lumbar and thoracic were done at the same time (in the same session) but not on the same film. Will that be ok? I also got a CT scan.

            I got those done through my GP at the hospital radiology lab. They were standing up. I was standing the way I normally stand- which is rotated. So I don't know if I should get them redone, standing derotated? (which isn't that easy but I think it will show more lateral curving). I got a lumbar xray laying down 5 uears ago and it had different results. This is where I just don't understand how it is not done in any sort of thought out way. The VGH spine clinic (where anyone who knows something resides) requires a special set of 36 scoliosis xrays- but again, I do not qualify for that.



            thanx
            Hi...

            Scoliosis films have to be taken standing up, so there's no way to compare the prone X-rays. And, unfortunately, it's difficult to tell much when the X-rays aren't stitched together into 36" long films.

            If you can figure out how to get pictures of the X-rays, and post them here, I'll let you know if there's enough information on which to comment.

            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

            • #7
              Hi Linda, thank you for responding.

              Well the latest were standing up and I already paid extra to get digital copies, so yes I can post them here.

              Now you said something that has me very curious- you say ideally they need to be stitched togther to make one 36 inch long film- is THAT what the VGH clinic was talking about when they mentioned 36? I thought 36 meant 36 separate xrays all done in some kind of complicated fashion. If all they mean is one whole torso xray- I can get that done anywhere. I can even get that done at a chiropractors office.

              thanx

              I will post what I have. I just need to photoshop them to erase out my name etc so it may take a couple of days.


              Would it help if I got whole torso xrays at a chiropratcors office? I could get 2: one rotated and one derotated.

              Thanx again

              Comment

              • #8
                scoliosis x-rays

                The proper way to X-ray scoliosis, in its twisted entirety, is called the "long cassette" view. This special x-ray(not sure a chiro has that expertise)shows the whole spine back and side views at once--from neck to sacrum. This way the doctor can measure and assess the problem as a whole entity.
                Anything less might miss something.
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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                • #9
                  Thank you

                  Comment

                  • #10
                    Don't know if you're still looking for help, but I know the best surgeon for scoliosis in the Vancouver area is at the Children's Hospital. Obviously you're not a child, but they may be able to direct you to someone who can help. I went there for a consultation when I was 15...never did the surgery though.

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