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  • Your Opinions, Please,..

    Okay, the pediatrician just called, and says that he and the radiologist went over Courtney's x-rays, and that she's less than he thought at the time of her appt. He says she's 11 degrees, and that is basically a 'rodo' score for all three curves combined,.. anyone heard of this? He says he'll just see her back in 1 year.

    Her sway back is sooo bad that I find it hard to believe that part is measuring so little, and also I have been reading where you all talk about different degrees for different locations,.. why is he giving her a 'combined' score?

    I asked if we could still see the pediatric orthopedic surgeon to be sure, and so he said he'll have him look at her x-rays, but that he doubts he'll say anything different. So, we don't get to go see the specialist now! I'm a little upset.

    Any thoughts on this?

  • #2
    This "rodo" score is new to me! Jamie's doctor always gives us a measurement for every Scoli. curve and a different measurement for her Kyphosis.

    If I were you, I'd make an appointment with the specialist myself. I recently did that for Jamie's ankle--family doctor said it was badly sprained, never re-xrayed it and told us to remove the splint. However, when I called the orhto, they set up an appointment right away and put her in a cast! The x-ray tech and peditrician may be right, but if it would give you piece of mind, try to make the appointment yourself.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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    • #3
      hi. DONT wait a year to go back. i got checked in may of 05. i had like a 5 degree curve. by the time i wentback (september) it had risen to 25. i would go back in maybe 3 months or so.
      Diagnosed @ age 14 (now 15)

      i HAVE A LOVELY SPINECOR BRACE

      CUrVES* 14&&17 as of 4.22.06 (out of brace)

      ATLANTA, GEORGiA

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      • #4
        Hi,

        Ditto what the others said. Make an appointment yourself to see a pediatric orthopedist. Regular pediatricians do not routinely read scoliosis xrays (unless they have a unique interest in scoliosis). I don't think there is such a thing as a "combined" reading in the orthopedic world. Each curve of the spine that is outside the "normal" ranges should be measured independently. I'm afraid I wouldn't put much stock into what the regular ped is telling you. Even having a radiologist help out. Neither are spine specialists. Good luck and let us know how things go.
        Carmell
        mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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        • #5
          THANK YOU!! These are the same things I was thinking in my head, but I wanted to get your opinions on this in case I was over-reacting.

          I even asked him specifically,.. what about her low back??? It sways so bad, isn't the 11 degrees just for the scoliosis portion side to side that is the least of her curves?... "It's all combined into one number," he said.

          We have to have a referral to see the specialist,.. I'm going to press the pediatrician for it. I don't just want the ped. ortho. to read the x-rays they took, I want him to see my daughter. If he won't do it then I guess I'll have to get billed for out-of-network, and do it myself. My daughter's well-being is way more important than that. I'm really upset about this.

          Also,.. can I ask, when you've had films done, do they just do them from one angle?? The tech had her face a panel and rolled her shoulders forward, then took two x-rays of her spine, and that was it. he said most radiologists can read the other curves from the one angle, but I guess I'm just a numbskull because I don't get how you can really tell how bad the backward curve is unless you get a side-view film. Am I wrong? I really don't know anything about this so perhaps you girls can enlighten me.

          Thanks for all the help,.. I'll be seeing the pediatrician again Tuesday afternoon for my middle daughter's check-up so I'll press him for the appt. with the specialist again then. I'm feeling pretty irritated in the meantime.

          (((hugs))) girls, and thanks for the support!!!

          Comment


          • #6
            Good luck with getting a referral.

            When Jamie gets her x-rays done they do them from different angles--full x-ray of the front, full x-ray from the side, plus others-but I'm not sure if that typical of Scoliosis patients as Jamie also has Kyphosis and that is usually viewed from the side.

            You are NOT a numbskull! What you are is a mom who is new to all of this and trust me, all of us have been where you are at some point. Everything you've said to me as how the radiologist reads an x-ray sounds pretty weird to me.

            Although you are feeling very irrated right now, don't give up the fight. You are doing the right thing by pushing for a reaferral.

            Mary Lou
            Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

            Comment


            • #7
              You don't have to have a referral to get your daughter into Shriners Hospitals. There are 22 of them across the nation. Pretty incredible doctors and hospitals. Their specialty - PEDIATRIC ORTHOPEDICS. They also have three burns centers. They only do Burns and Orthopedics. Nothing else. Doctors offices, x-ray, orthodics, hospital, etc., all in one building. You don't have to go here and there to get everything done. You can call your closest Shrine Hospital and do an application over the phone. The upside to this is, Shrine Hospitals and doctors provide their services for free to any child, regardless of income. They have the best of the best for doctors. The downside, you may have to drive a little distance to your nearest hospital. We drive 5 hours one way. Wouldn't have it any other way. It is well worth the trip for us, especially with three daughters with scoliosis/kyphosis.

              Nikki

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              • #8
                Ditto what Nikki said. We have pretty good insurance and tons of doctors to pick from in New York - many considered top notch - but choose to travel nearly 3 hours each way to the Philadelphia Shriners Hospital. I, too, wouldn't have it any other way. The care my son has received there has been THAT good.

                best of luck to you,
                mariaf305@yahoo.com
                Mom to David, age 17, braced June 2000 to March 2004
                Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                https://www.facebook.com/groups/ScoliosisTethering/

                http://pediatricspinefoundation.org/

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                • #9
                  My son has kyphosis and scoliosis. He always gets two XRays . . one from the side and one from the back (or maybe front . . I'm not with him to know that for sure!) but I do know they often forget to do the side Xray and he has to go back to get it done when the doctor comes into the room and he realizes they didn't do it. The side view is specific to the Kyphosis, I think, and since most kids don't have both, the techs sometimes forget to do both.

                  The only time I have heard of "different" numbers in the measurement of curves is from SCREENING versus an Orthopaedist measurement of the spine form XRay.

                  The school nurse who identified my son via school screening reported a number that was around 11 or so. The doctor's number at first was 28, so I commented to him that the curve had increased since the nurse saw him or maybe the nurse was wrong? He told me that the number from the nurse was a screening number and not a true measurement of the degree of curvature. His 28 degrees was a true measurement of the curvature.

                  Never heard of any combined number score ever.

                  We get one number score for the kyphosis and a separate and very different number score for the scoliosis.

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                  • #10
                    I think the 11 from the school nurse might be a scoliometer reading. It is kinda a level for the back. When it goes down the spine it can check for unevenness of the spine. I think up to 7 is normal.
                    If the pedi says that he doesnt need to see a peds ortho, maybe you need to be at a diff ped. The parents are usually right, and you are the only one that is around your son all the time. Get it checked out. I have never heard anything bad about shriners. I know there is a location in Oregon. Good luck.
                    Mandy

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                    • #11
                      Butterfly 8t8, Just to let you know. We drive from LaGrande to Portland for our Shriners appointments. Don't know where you live in Oregon. But, the Portland Shrine Hospital is great. Check them out.

                      Nikki

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                      • #12
                        Thanks everybody,.. all the support really means alot. I've been trying to get help for my daughter for 3-4 years now. Good to know about Shriner's, too,.. I saw their sign when I took my youngest for her oncology appt. at Doernbecher's Wednesday. Is that the one you go to, Nikki? I'm in Keizer, next to Salem, so I'm a lot closer. I've been driving back & forth to Portland for my youngest's specialty appts for a couple of years, but we always went to Emanuel. This was our first visit up to OHSU so I'm still trying to familiarize.

                        For now, I'm trying to just calm down a bit until Tuesday afternoon when we'll see the pediatrician again for my middle daughter's check-up,.. I'm going to really press him for the referral. if he doesn't cooperate, I'm going over his head and will press the issue further until I get the results I want,.. even if it means going elsewhere. After Tuesday, regardless of whether he goes ahead and gives us the referral or not,.. I'm changing pediatricians. He kind of creeped me out anyway, and obviously after this, I don't feel like I can trust his judgement on anything else either.

                        I'll let you all know what happens! (((hugs)))

                        Comment


                        • #13
                          Butterfly, That's the one. I grew up in Salem, very familiar with Kiezer as that is where my best friend lived. I went to North Salem many moons ago, but I graduated from Cascade Sr. High in Turner.

                          You don't have to wait for your daughters pediatrician for a referral to Shriners. Call them and tell them what she was diagnosed with. They will fill out the application for you over the phone and process it. When it is processed you will get an appointment and go from there. Personally, I wouldn't wait on the pediatrician. You want someone that specializes in Pediatric Orthopedic treatment. That is exactly what Shriners does. And, as long as you child is diagnosed before their 18th birthday, they will treat the problem until they are 21 years of age at no cost to them.

                          Isn't the construction on that hill fun. I always let my hubby drive it. We go over again the end of April. And, then shortly after that, as Crystal has to have surgery on both of her feet.

                          Keep us posted on how things are going. You can tell your pediatrician you want to be referred to Shriners. You can also download an application and take it with you to the doctor appointment and have the doctor fill out the recommendation.

                          Let me know if you have any questions about Shriners.
                          Nikki

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                          • #14
                            Found some great info,...

                            Okay, so I don't sit still well when I have to wait for something, LOL,.. I see the pediatrician tomorrow, but in the meantime, I've been 'researching' more information, and I think I found a perfect resource to take with me to show him how this is being handled inadequetly. http://www.rad.washington.edu/mskbook/scoliosis.html

                            What do you guys think? I like this because it shows a lot of examples, but also stresses about seeing an orthopedist, how fast curves can progress in prepubertal & pubertal children, how the curves should be measured, and that they should be measured individually... it also stresses getting not just the standing AP films, but also the lateral films,.. I almost feel like I know more about spinal curvatures just in researching the information for myself this past week, than that darn pediatrician does.

                            Anyway, I printed out the entire thing to take with me, and I'm highlighting all the key points that regard to my daughter. I'm going to take my digital with me, and see if I can get him to put her films back up so I can get some snaps... that's what a lot of people on the other board do. I'm going to request the radiologist's report. I want to see how it compares to how this information says it should, as far as what type of information it should contain. I'm guessing it will be lacking since they didn't do everything they were supposed to.

                            I checked, and I can change doctors any time I want so I'll be doing that as soon as we're done with him tomorrow.... I did also find out that yes we do have to have a referral to see the pediatric orthopedic surgeon, but I also got the information on the Shriner's Hospital so if I can't get anyone to cooperate with me this week, then I'll try them instead. Perhaps I ought to just consider skipping over the rest of this, and go straight to Shriner's, but I do think I should see where I can get over the next couple of days first though,.. this insurance is costing us $1200/mo so I feel like I should insist on getting the care she needs out of it, or at least try first... we're certainly entitled. If I don't get anywhere by week's end, then I have the info sitting here for Shriner's. Thanks again for letting me know about it.

                            Well, I'd love input on the article,.. I also realized from it that my daughter has a double curve just for the scoliosis, not counting the kyphosis and the lordosis. Her lower curve goes to the left, and then curves over to the right, too, just above it, again not counting the exaggerated forward and backwards curves.

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                            • #15
                              Butterfly, It is good that you are doing some much research. You need to be really comfortable with everything. I did the same thing. I was like a kitty on a hot tin roof.

                              You also need to check how much your insurance will cover. They may say 100%, but that isn't always the case. That is one reason we used Shriners. The insurance said they would pay 100%, but when we really checked on the incidentals and things, they wouldn't pay for about $20,000 of the whole thing (Over $200,000.).

                              Besides, in my book, Shrine Hospital has the best of the best of doctors that do these treatments. If you daughter needs a brace, they make it for her right there, or they order one, and at no cost to you. Some of those braces get pretty spendy.

                              There are several reasons I am so pro-Shrine Hospital. All three of our daughters have scoliosis and/or kyphosis. Our 17 year old had surgery March 15, 2005, our middle daughter is a wait and watch, but they don't think she will progress any farther on a curve, and our youngest daughter wears a brace for hers. I can't even begin to think what our costs would of been on all of this. Second, it is a great place and great staff, from A-Z. Third, my husband is a Shriner, yes he wears the little funny red hat that you see in the parades. So, I probably hear more first hand what funding takes place to fund the hospitals and help with raising money for the hospital.

                              When they first evaluated Crystal, they weren't sure if they wanted to do surgery on her. She broke down in tears in front of the doctor and told him she was tired of being in pain all the time and something needed to be done. With that he realized immediately how bad she hurt and something needed to be done. She had quit growing by that time, so bracing wasn't even an option. She would of been happy with bracing if the doctor would of thought it would work. Today, I can't say she is 100% pain free, but she doesn't hurt like she used to.

                              Do get more than one opinion from Pediatric Orthopedic Doctors. You are allowed to do that. You don't have to go with the first one, and you don't have to go with who your pediatrician recommends.

                              I hope these things help. I tend to ramble and I apologize for that.

                              Nikki

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