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  • What to do

    Hey folks, me again, and I am not doing well. Today my lumbar pain was so bad I had sweat rolling off my forehead. Also had this numbing and tingling sensation down my left leg, boy, that feelling is terrible. I just dont know what else I can do. My surgeon sent me a letter from my appointment 3 months ago stating that he believes surgery would not offer me any reliable pain relief and on that basis does not recommend surgery unless all other options have been exhausted. I am not sure what else i can do now with alternative therapies. I have been swimming heaps and getting remedial massages plus chiro treatment, all with only brief relief. This lumbar curve is baaad, the muscle on the left side is constantly rock hard, swollen and very sore and from my waist to the top of my head is always aching. I dont see how any therapies would help with that.
    I really dont want to keep hassling my surgeon, but he did say in his letter that if i get a worsening in my pain to go back and see him. I just think he will think that I have not given the recommended therapies enough time to work, but I know my body and can tell they are not going to work because they havnt in the past and are not now. I feel my pain is getting worse, evident aswell as i am popping constantly codeine for some relief. I put up some pics of xrays, feel free to check em out and tell me what you think.

    I think i am losing my mind with all this, I am worried what it might come too, any advice, as usual, will be much appreciated.
    45L/40T
    Surgery 25/1/2010
    Australia

    Knowthyself

    Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

  • #2
    Jimbo,

    Sorry to hear you are having problems.

    Have you had an MRI done to see if there are any pinched nerves? The tingling down the leg makes me think that is a problem there.

    For the rock hard back, do you have anyone that can give you massages? I need a massage every 2 or 3 days or the knots in my back start causing lots of pain. Its kind of a circular problem, my lower back pain causes knotting, which causes further pain, after the massage we rinse and repeat constantly.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

    Comment


    • #3
      Just a thought!

      I am 32 have scoliosis and had four surgeries. But I also had a friend with scoliosis who is 60 and she was having similar problems they found it to be associated not with her back but fibromyalgia. Just an idea to look at a specialist that deals with fibromyalgia. They helped her tremendously.

      Auge
      T4 - L4 fusion 1999
      66 degrees thoracic
      58 degrees lumbar
      Adrienne
      1991 T4 - T12 Fusion
      1993 Rod Removal
      1999 T4-L4 Fusion (7 rib thoracoplasty)
      2002 Rod Removal 58;49 degrees
      Denver, CO; Dr. John Odom
      Rocky Mtn. Spine Center

      Comment


      • #4
        Jimbo,

        I'm sorry that you're having so much pain. Maybe you should go back to the surgeon since he said to do so if you were in more pain. I hope you can get some relief in the mean time.
        __________________________________________
        Debbe - 50 yrs old

        Milwalkee Brace 1976 - 79
        Told by Dr. my curve would never progress

        Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
        Pre-Surgury Thorasic: 66 degrees
        Pre-Surgery Lumbar: 66 degrees

        Post-Surgery Thorasic: 34 degrees
        Post-Surgery Lumbar: 22 degrees

        Comment


        • #5
          Hi Jimbo...

          Since your xrays were taken on a short cassette machine, I suspect that your doctor may not treat a lot of scoliosis patients (although it's possible that things are done differently down under). If your surgeon isn't listed here (or maybe even if s/he is):

          http://www.srs.org/find/index.php?mo...lia&specialty=

          ... you might want to consider getting a second opinion.

          Best of luck.

          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


          • #6
            Please do not lose your mind. If you do - we all will. We are here for you - vent as much and as often as you can.
            I, too, am in awful pain, have problems swallowing and (get this) even have experiended 2 episodes of not being able to hold (shall we say) it when on the way to hte bathroom. I hate to even mention that. Like the swallowing roblems wasn't enough. What other surprises are there yet to experience. I'm not one to look forward to yet another surgery, but this is absdolutely driving me nuts. Not one person should experiencde this much pain - let alone these other problems. I see surgeon next week - so hohpefully he has some tricks up his sleeve.

            So, do not feel alone here. I understand that you have already had surgery?" But, whatever pain - we are all in this together....

            Keep hanging in there....
            Rita Thompson
            Age 46
            Milwaukee Brace wearer for 3 years in childhood
            Surgery Mar 1st - 95 degree thoracic curve
            Surgery by Dr. Lenke, St. Louis, MO
            Post-surgery curve 25-30 degree

            Comment


            • #7
              Hi Jimbo, just had a look at your x-rays, bit hard to see, but looks similar to mine. Have you checked the Scoliosis Australia site? There are surgeons listed here that you may want to consult with. As you will see by my signature, my surgeon was done by Dr. Hall-assisted by Dr. Cain both on the list for South Australia. Good Luck!
              Vali
              44 years young! now 45
              Surgery - June 1st, 2009
              Dr David Hall - Adelaide Spine Clinic
              St. Andrews Hospital, Adelaide, South Australia
              Pre-op curve - 58 degree lumbar
              Post -op - 5 degrees
              T11 - S1 Posterior
              L4/5 - L5/S1 Anterior Fusion

              Comment


              • #8
                Hi Jimbo
                i am not sure i understand your situation...i believe you have never had surgery...is that correct? have you been to pain management doctors? if you cannot have surgery, perhaps injections of some sort might help you?

                have you seen other surgeons for other opinions?

                not trying to upset you, just want to understand what you are dealing with...?

                hope you start to feel better soon...

                jess

                Comment


                • #9
                  I too, think it might be time for a second opinion, if you haven't already done so, Jimbo. I would highly recommend my surgeon and I know he has had some patients come up from Sydney. It's a matter of getting your GP to refer you then send up your xrays for him to see. He will then schedule an appt. I know, easier said than done when you live interstate.

                  PM me if you would like his contact details.
                  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


                  • #10
                    This is a dated post-- Jimbo wrote it in Sept. 2008. It may not be pertinent anymore... maybe Jimbo will let us know.
                    71 and plugging along... but having some problems
                    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                    Corrected to 15°
                    CMT (type 2) DX in 2014, progressing
                    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                    Comment


                    • #11
                      Oops!

                      Hope things are much improved now!
                      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


                      • #12
                        Go through the sweaty forehead all the time myself. So, nothing unusual huh? Gosh, nice to hearj of someone else in that much pain....hang in there.
                        Rita Thompson
                        Age 46
                        Milwaukee Brace wearer for 3 years in childhood
                        Surgery Mar 1st - 95 degree thoracic curve
                        Surgery by Dr. Lenke, St. Louis, MO
                        Post-surgery curve 25-30 degree

                        Comment


                        • #13
                          Originally posted by JenniferG View Post
                          I too, think it might be time for a second opinion, if you haven't already done so, Jimbo. I would highly recommend my surgeon and I know he has had some patients come up from Sydney. It's a matter of getting your GP to refer you then send up your xrays for him to see. He will then schedule an appt. I know, easier said than done when you live interstate.

                          PM me if you would like his contact details.
                          Thanks Jen, but I have found my surgeon

                          I love Queensland though, I might go there for a trip after I recover.
                          45L/40T
                          Surgery 25/1/2010
                          Australia

                          Knowthyself

                          Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

                          Comment


                          • #14
                            Hi Jim
                            you said your surgeon said injections "are not an option for you"...are you sure...it might be worth a trip to a skilled pain management doctor to hear why or why not...cause i just dont buy it...my muscle pain on upper 40 degree (lesser) curve is stopped in its tracks..literally...with botox shots...every 4-6 months...my lower lumbar is 63 degrees & am considering T11-S1 & L4-S1 front & back surgery for 2010...in meantime, i refuse to give up on pain management...after ineffective epidurals, facet block & nerve ablation (or very little effect i should say) i got real relief with sacroiliac injections....dont know for how long, but am deeply grateful for ANY pain relief i can get from anywhere!!!!

                            also, is that a sciatica you have, or nerve pain/damage...have you tried enuf doctors & second opinion to be sure there is no (even temporary) help for you? i would just encourage you to keep an open mind & try another doctor for the pain...i mean, if they dont operate, what option is left?

                            i will probably have surgery in the end, but for now i gratefully accept whatever help i can get!!!

                            best of luck to you
                            jess

                            Comment


                            • #15
                              Holding it

                              Originally posted by RitaR View Post
                              Please do not lose your mind. If you do - we all will. We are here for you - vent as much and as often as you can.
                              I, too, am in awful pain, have problems swallowing and (get this) even have experiended 2 episodes of not being able to hold (shall we say) it when on the way to hte bathroom. I hate to even mention that. Like the swallowing roblems wasn't enough. What other surprises are there yet to experience. I'm not one to look forward to yet another surgery, but this is absdolutely driving me nuts. Not one person should experiencde this much pain - let alone these other problems. I see surgeon next week - so hohpefully he has some tricks up his sleeve.

                              So, do not feel alone here. I understand that you have already had surgery?" But, whatever pain - we are all in this together....

                              Keep hanging in there....
                              Hello, Just read your posting of last August and noticed I have a smiliar problem with 'holding it' on way to bathroom. Arriving home, just opening the car door seems to start the urge. I even had an 'accident' recently while at a dinner party and was so embarrased I nearly left at once. So, are you saying this is related in some way to the scoliosis? Since my diagnosis (28 degree curve) many other problems have arisen but perhaps they are related to aging.
                              I don't know, but this incontenence is very worrying and don't know what to do about it. I told my doctor but he doesn't give, or know any remedy. If it is due to scoli, then I'll take it as just another by product. WOuld be interested in your opinion, but since it's nearly a year ago, perhaps you have conquered the problem. Thanx. Richka

                              Comment

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