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Just diagnosed at the age of 38 - do I need to see a specialist?

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  • Just diagnosed at the age of 38 - do I need to see a specialist?

    Hi

    I'm new to this forum and would like to ask your advice...

    I have just been diagnosed with scoliosis by a chiropractor at the age of 38, after having years of undiagnosed back pain. I then went to my GP who referred me to a physio, but he never suggested sending me to a scoliosis specialist - neither did he even examine me, even when I told him what was wrong with me!

    Anyway, having seen the x-rays that the chiropractor took, and comparing them with other x-rays I've seen, I think my scoliosis falls into the 'mild' category (I don't actually know what Cobb measurements are). Having said that, I can see the outward signs of it ie the ribs sticking out more on one side, ribcage unlevel, right shoulder blade sticking out, pelvis higher on one side - I think it is the wonky pelvis which is giving me the most pain at the moment.

    So my question is, do I go back to my GP and insist that I get referred to a specialist? Or do I just carry on with the physio etc and learn to live with it? I know my case is definitely not bad enough for surgery, and from what I've read there is no other treatment for adult scoliosis, it is more just a case of trying to alleviate the symptoms. And am I right in thinking that if you have a mild case as an adult, the curves are fairly stable and unlikely to progress? If this is the case, there would seem little point in pursuing it with my GP.

    I don't want to make a fuss about this to my GP if nothing can be done about it - and surely if he had thought it was serious he would have referred me? (Then again he didn't even examine me so how could he know how serious it is?! Maybe he is waiting for the report from the physio...)

    So, will I be demanding or just accept it and get on with trying to alleviate the symptoms - what do you think?

  • #2
    I believe you should get a second opinion. As an adult, you will not get the same treatment as a child, but nevertheless, go get a second opinion. Ask the new physician what you should do next, and if you should see a specialist. If it is causing pain, I would see a specialist as well.
    My name is Justine
    I am 17 years old
    I live in Canada
    March 2007 - 13 degree curvature
    June 2007 - 28.5 degree curvature
    January 2008 - 27 degree curvature
    CHEO June 26th

    Comment


    • #3
      A) I'd be hesitant to let a chiropractor diagnose me (that's just me).
      B) GP's often know very little about a specialized condition because they have to know a little about a LOT of conditions.

      You didn't say where you're located, but if you're in the States - and on a PPO - I'd suggest you seek your own specialist (www.srs.org/locator) and not assume your doctor would refer you when he didn't even look at your x-rays.

      If you're on an HMO, I'd still locate a specialist who accepts your insurance - and then yap incessantly at the GP until he cried "Uncle!" and wrote a referral.

      Even if your curve is mild, you may not have to live in pain. If a scoli specialist can't help, a pain managment doc might.

      Be proactive, and best of luck to you!

      Best regards,
      Pam
      Fusion is NOT the end of the world.
      AIDS Walk Houston 2008 5K @ 33 days post op!


      41, dx'd JIS & Boston braced @ 10
      Pre-op ±53°, Post-op < 20°
      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


      VIEW MY X-RAYS
      EMAIL ME

      Comment


      • #4
        I was over 40 when diagnosed. Even a layperson can diagnose scoliosis by looking at X-rays, it's usually that obvious.

        The Cobb angle is explained and depicted in the Wikipedia article on scoliosis.

        A non-surgical alternative that your doctor or even your physiotherapist may not know about is physical therapy via the Schroth method. You can read about it in other posts on this forum, particularly the Non-Surgical threads. It is based upon the concept that scoliosis is caused by a complex imbalance of musculature in your back (and usually in lower extremeties also) that contributes to pulling the pelvis and spine out of alignment. Physical therapy for scoliosis strives to elongate and derotate the spine into normal physiological position, partly by strengthening the weaker muscles. The patient is taught a stretching, elongating, and strengthening exercise regimen designed to prevent the abnormal curves from worsening and ideally at least partially reverse the pathology. Success is rarely complete, but most patients can improve posture and relieve pain via Schroth.

        There's a list of Schroth therapists in the US on the front page of the NSF website (www.scoliosis.org). Search here for Schroth threads and focus on comments by people who have direct experience with it. Unlike chiropractic, Schroth can help with scoliosis, and you can usually expect at least pain relief.

        You and your PT can find out more about the Schroth method at the website of the lady who helped develop it (there's an English-language section):

        http://www.schroth-skoliosebehandlung.de/

        Good luck.

        Comment


        • #5
          Writer, she asked if she should see a specialist.

          Of *course* scoli is oft times visible on an x-ray.

          Whether she chooses Schroth or any OTHER method, she needs to know her Cobb, get baseline films, and watch for progression as well as manage pain.

          Your dismissal of traditional SRS doctors with blanket statements has quickly become tiresome.

          I'm afraid that neither orthopedists or almost any other physician in Anglo-American medicine understands any scoliosis treatment beyond 1) watch and see if it gets worse, 2) put the young patient in a torso brace, or 3) fuse vertebrae surgically if the curves get bad enough.
          Contrary to your YOUR belief (and of course you know best), they don't all advocate surgical correction simply because they ARE surgeons.

          She doesn't yet have firm facts on her case. I think it would be prudent to gather them before deciding on ANY treatment.

          Regards,
          Pam
          Last edited by txmarinemom; 01-08-2008, 02:53 PM.
          Fusion is NOT the end of the world.
          AIDS Walk Houston 2008 5K @ 33 days post op!


          41, dx'd JIS & Boston braced @ 10
          Pre-op ±53°, Post-op < 20°
          Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


          VIEW MY X-RAYS
          EMAIL ME

          Comment


          • #6
            It was just 2 years ago that I realized I actually had a scoliosis problem-- at age 54, although then I remembered back that a doctor had mentioned it in passing when I was 27. Two years ago my present family doctor--and I don't fault him for not noticing before, as it wasn't very noticeable unless you were looking for it and I didn't complain about the pain till then-- said we should at least get some x-rays so it could be monitored. They were bad enough that he had me see an orthopaedic specialist who then referred me to a scoliosis specialist, and I ended up having surgery within 2 years. What I thought was just an aching back over the years, aggravated by arthritis, was really scoliosis compounded by additional problems.

            I would suggest asking your doctor (or finding another one who would) to at least get initial baseline x-rays for monitoring any changes you might experience with time. If he doesn't refer you to see a specialist based on your x-rays, be assertive and request seeing a specialist. You can say that you don't feel comfortable not pursuing it farther. Even if nothing needs to be done now, your scoliosis can be documented and followed. And hopefully you would find someone who could help you with the pain aspects. Best wishes!

            Pam--I agree with you. My surgeon did NOT push surgery AT ALL. He left it up to me to decide, based on whether I wanted to continue with the pain and limitations, etc., I was experiencing or opt for surgery-- with the realization that age factors in to the big picture...
            Last edited by Susie*Bee; 01-08-2008, 02:34 PM. Reason: addition
            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


            • #7
              txmarinemom, a Schroth practitioner IS a scoliosis specialist and understands very well the dynamics of that pathology, particularly the pain symptoms that Carol is talking about. They can usually address the pain soon (a Schroth PT fixed mine immediately), while doctors often do not know how to determine the source of the pain. A PT will go straight to work on that "wonky pelvis" because that is probably a prime source of Carol's problem. The Schroth method commences with five postural corrections that need to be made to the pelvis of a scoliosis victim.

              My X-rays were shown to an orthopedic surgeon. She said, "There's nothing we can do for him." Probably because I was past bracing age and not bad enough for surgery, just like Carol. Many orthopedists claim that exercises won't work, but Dr Martha Hawes' book Scoliosis and the Human Spine (it is available on the online Store here at the NSF website) surveys the clinical literature and concludes that there is no scientific basis for this belief. Yes, this is surprising, but you can verify it by reading the book, or showing it to your surgeon. Therefore I conclude that surgeons have their limitations of perspective, despite their M.D. degrees, because of historical limitations in clinical research on scoliosis that are analyzed at length by Hawes.

              txmarinemom misstates my beliefs, though. Please read my posts carefully. Of course surgeons don't always advocate surgery, and in Carol's case she's already been told she's not a surgery candidate. Regarding adolescent scoliosis, the SRS website states: "Treatment options include observation, bracing or surgery." That's the full spectrum. If the patient is not a bracing or surgery candidate, then there are apparently no further treatment options. This does not mean either brace or operate, it means that there is no recommended treatment beyond these, and the patient who is not braced and not a surgery candidate simply doesn't get treatment recommended at all. That was my personal experience. It's actually quite enlightened of Carol's GP that he suggested physiotherapy; I don't think this is usual procedure.

              I don't find a statement about older patients on the SRS site -- correct me if there is one. So if those are the only options, and they are not options for Carol, then consulting an SRS surgeon may not be a high priority. If physical therapy doesn't help -- and the patient generally knows pretty quickly if it is helping or not -- then of course talk to a physician about surgery.
              Last edited by Writer; 01-08-2008, 04:24 PM.

              Comment


              • #8
                You conclude, you believe, you think; it must be so!

                You don't know what Carol's Cobb measurements ARE, yet you compare her case to your own? And you are a MALE, which makes comparison even MORE skewed.

                Your view (that was your verbatim quote from another post) of "Anglo-American" medicine was quite clear. Spare me. I know you fancy yourself quite the expert, but you're merely a patient dear.

                Just like the rest of us.
                Last edited by txmarinemom; 01-08-2008, 05:09 PM.
                Fusion is NOT the end of the world.
                AIDS Walk Houston 2008 5K @ 33 days post op!


                41, dx'd JIS & Boston braced @ 10
                Pre-op ±53°, Post-op < 20°
                Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                VIEW MY X-RAYS
                EMAIL ME

                Comment


                • #9
                  Originally posted by Writer
                  ...in Carol's case she's already been told she's not a surgery candidate.
                  You should read more carefully, Writer. Carol doesn't think her curve is severe enough for surgery.

                  Nowhere did she say ANY physician said that was the case.
                  Fusion is NOT the end of the world.
                  AIDS Walk Houston 2008 5K @ 33 days post op!


                  41, dx'd JIS & Boston braced @ 10
                  Pre-op ±53°, Post-op < 20°
                  Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                  VIEW MY X-RAYS
                  EMAIL ME

                  Comment


                  • #10
                    Thanks!

                    I just wanted to thank you all for your replies - its great to get advice from people who have been through something similar.

                    To clarify a few points, I live in the UK - so I'm not sure how diagnosis/treatment differs between the US and the UK.

                    And I really have had no support or advice from my GP at all, which is why I've been left feeling unsure of what to do next. He referred me to a physio for back pain, not for scoliosis. And all the physio has been doing is trying to treat the pain - currently with acupuncture, rather than addressing what I think is the CAUSE of the pain - the scoliosis. When I told my GP I had scoliosis, he didn't even comment on this - he didn't examine me and didn't suggest further investigation. So I went away thinking there was no need to take it further. Its only when I thought about it afterwards, this doesn't seem right to me - surely it needs to be properly investigated, even if it is just to discover its a mild case and isn't likely to progress?

                    So I think I will take your advice and get the full facts from someone who knows what they are talking about, rather than try to guess how bad it is or what the prognosis is.

                    I am really quite cross with my GP now for his lack of interest!

                    Thanks again - I'm sure I'll be back to ask more questions before long!

                    Comment


                    • #11
                      Carol, I apologize you were involved in the differing opinions we obviously have here.

                      After 4 years of traditional (medicinal, Western, ablation, FJ injections, etc., etc.) pain management (by a pain mgmt - anesthesiologist - M.D.) he referred me to an Eastern (Vietnamese MD) acupuncturist. It worked for a while ... for some it works well in the long term.

                      I, too, would be upset by a patent dismissal (the refusal to even read/acknowledge your films blows me away) of the scoli by your GP.

                      Hopefully you'll find your answers soon. Best to you.

                      Regards,
                      Pam
                      Fusion is NOT the end of the world.
                      AIDS Walk Houston 2008 5K @ 33 days post op!


                      41, dx'd JIS & Boston braced @ 10
                      Pre-op ±53°, Post-op < 20°
                      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                      VIEW MY X-RAYS
                      EMAIL ME

                      Comment


                      • #12
                        txmarinemom - no problem at all I know you are all trying to help, and it is only natural for people to have different opinions on such an emotive topic!

                        Thanks again

                        Comment


                        • #13
                          Originally posted by Susie*Bee
                          My surgeon did NOT push surgery AT ALL.
                          Not too long ago through a co-worker I was put in touch with a 68-year-old woman who is confined to a wheelchair. This woman only wishes a surgeon had “pushed” her to have surgery. Now because of the severity of her curves and breathing impairment, she is no longer a candidate for surgical intervention and she must live with the consequences of being untreated. Exactly one year ago I had a surgeon after reviewing my x-rays turn to me and say, “you know this is only going to get worse. You are going to have to have surgery. I can’t tell you when – maybe in 2009 or 2010, but I can assure you one day you are not going to be able to stand up.” At the time I thought he was being an alarmist and his approach was rather harsh. Twelve months later I can honestly say he was right on the money. Since then I’ve seen my curve progress substantially and I am experiencing neurological symptoms in my left leg. The other day in the grocery store my leg almost buckled under me. If a surgeon sincerely feels that a patient can benefit from surgery, I feel he has an obligation to inform the patient. That’s why we are paying these people when we consult with them. We are seeking their honest opinion and recommendation. A surgeon is doing a patient no favor by telling them that surgery is a decision that only they can make or suggesting that they wait until they can no longer function before they have surgery.

                          Chris

                          Comment


                          • #14
                            Chris--I don't think I have any problem with what you said. As far as my case goes--all of that was explained fairly well to me and I understood what the consequences/outcomes could be either way. Even so, the final decision was left to me to make. It has to do with the quality of life you want (i.e. wheelchair, breathing problems, increased pain, etc.) vs. the surgery, possible complications, and extensive recovery time. I felt all the facts were presented to me fairly well over the course of about 18 months--from my first appt. till the time we (my husband and I) said "let's go for it." I hope I cleared that up a little. He did not PUSH the surgery, but did explain the probable benefits and need, if that is what I chose. I know, clear as mud. Oh well.
                            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


                            • #15
                              Originally posted by carolad
                              Hi

                              I'm new to this forum and would like to ask your advice...

                              I have just been diagnosed with scoliosis by a chiropractor at the age of 38, after having years of undiagnosed back pain. I then went to my GP who referred me to a physio, but he never suggested sending me to a scoliosis specialist - neither did he even examine me, even when I told him what was wrong with me!

                              Anyway, having seen the x-rays that the chiropractor took, and comparing them with other x-rays I've seen, I think my scoliosis falls into the 'mild' category (I don't actually know what Cobb measurements are). Having said that, I can see the outward signs of it ie the ribs sticking out more on one side, ribcage unlevel, right shoulder blade sticking out, pelvis higher on one side - I think it is the wonky pelvis which is giving me the most pain at the moment.

                              So my question is, do I go back to my GP and insist that I get referred to a specialist? Or do I just carry on with the physio etc and learn to live with it? I know my case is definitely not bad enough for surgery, and from what I've read there is no other treatment for adult scoliosis, it is more just a case of trying to alleviate the symptoms. And am I right in thinking that if you have a mild case as an adult, the curves are fairly stable and unlikely to progress? If this is the case, there would seem little point in pursuing it with my GP.

                              I don't want to make a fuss about this to my GP if nothing can be done about it - and surely if he had thought it was serious he would have referred me? (Then again he didn't even examine me so how could he know how serious it is?! Maybe he is waiting for the report from the physio...)

                              So, will I be demanding or just accept it and get on with trying to alleviate the symptoms - what do you think?
                              In many cases the curve progress if the persone with scoliosis does not learn to manage the increase of the torsions. There is a lot you personally can do. Go to www.scoliosistreatment-schroth.com . You can send me a private message .

                              Comment

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