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  • Dazed and Confused Parent

    Hi. I am new to this forum and would like to say how helpful and informative it has been for me during the last week. I am hoping to get some feedback and suggestions as my 15 year old daughter was just diagnosed with what I think is a mild or moderate scoliosis, but there are many things that don't add up.

    Michelle is a very active high school freshman - cheerleader, lacrosse player and competitive dancer (tap, jazz, ballet and modern). Last spring, she told me that she thought her back was "crooked" and that it might be scoliosis. I dismissed her because she gets screened twice a year (at pediatrician's office and school) and no one had ever raised a concern about it. I thought it was poor posture. Several weeks before Christmas, Michelle began to complain about back pain. I took her to my chiropractor, who on looking at her back, asked me if she had ever been diagnosed with scoliosis. When I said no, he was skeptical, but suggested that we try some adjustments before taking an x-ray. On New Year's Eve, after several adjustments with no pain relief, he took an x-ray which did show a curve in Michelle's spine. He suggested that we see a pediatric orthopedic surgeon. We are very lucky to live in Western Massachusetts near the Shriners Hospital in Springfield and he made a referral. We see Dr. Mack at Shriners on January 22. I also made an immediate appointment with Michelle's pediatrician who ordered another set of x-rays. I should mention that when the pediatrician examined Michelle, she still did not think that it was scoliosis. Three hours later, she called me at work and confirmed the scoliosis diagnosis! The radiologist's report said that Michelle has a "smooth reverse C-shaped scoliosis of the thoraco lumbar spine centered at T12 convex left, estimated to be 25 degrees.

    Here is what I don't understand:

    First, everything I have read about idiopathic scoliosis says that in adolescents, it usually occurs around the time of a growth spurt. My daughter began her periods at 10 years old. She is 4' 9 1/4" and has not grown in two years. In 2005, she had a bone age x-ray of her wrist which confirmed that she was almost fully grown. She did grow 3/4" that year but has not grown since.

    Second, Michelle is in pain. Is a 25 degree scoliosis usually painful? Could an unknown injury cause a curve?

    Third, and maybe I am doing too much surfing on the net, but Michelle also has complained of headaches very frequently during the last year or so. She even had a cat scan which turned up negative. I became familiar with Chiari malformation on this website and I wonder if there is a connection........

    I guess I have blabbed enough but I am very confused and scared that there may be something else wrong. I also feel very guilty that I never had Michelle checked last spring when she first complained about being "crooked". I would really appreciate any insights or suggestions from the forum. It would really help us during our appointment at the Shriners Hospital.

    Oh, I forgot to mention that Michelle was adopted at birth (the happiest day of our lives!!!!) and we have zero medical history.

    Thank you all for listening.

    Lisa

  • #2
    Hi Canterbury!
    Welcome to the forum! Definitely a good place to learn a lot! I like your daughter was diagnosed with scoliosis at around 13 or 14 years old. I was a competitive dancer like herself too!
    To answer your first question, idiopathic scoli doesn't always have to occur around your growth spurt. When I was diagnosed I had maybe a few more months of growing, but I was still put in a brace for 2 years. My doctor informed me that even when you're not growing your curve can progress. At 19, and done with bracing, I'm still visiting my doc at least once a year to make sure my curve hasn't progressed.
    To answer part of your 2nd question, pain depends on the person, not necessarily the degree. For some people, pain is minimal with smaller degrees, for others i can be unbearable. For the most part, it depends on how quickly the curve is progressing and how the surrounding muscles and/or nerves are reacting to the spinal change. Since she is an active girl, the pain may be a result of being so active. I always remember while I was dancing I was fine, but sometimes after I would be in complete agony.
    Good luck with your new scoli journey! If you have anymore questions feel free to ask! I know how it feels to be diagnosed at that age and would love to help ease you and your daughters worries!
    Francesca
    19 years old College Soph
    Diagnosed: 6th grade (can't remember curve degrees)
    Boston Brace 2000-2002, 23/7...
    Curves reside at 35T and 33L
    Aug 2002: Osteoid Osteoma (tumor) removed from L3
    Jan 26.. diagnosed with slow progressing DDD and sacroiliitis.. get fitted for my new SI Belt on the 31st

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    • #3
      Welcome Lisa and Michelle,

      First, take a deep breath. You are doing the right thing by seeing a PEDIATRIC orthopedic surgeon and researching and talking with other families who have been in similar shoes. Scoliosis is rarely an emergency situation. You have time to research and find the right "plan" for Michelle.

      I don't think anyone can tell you for certain when Michelle began developing scoliosis. It could have been years ago and its just now becoming evident. Her spine may be rotating more (making the asymmetry more obvious) rather than the curve itself progressing. Does that make sense?

      Lumbar curves tend to be more painful than thoracic curves. The majority of your body weight when walking/moving/etc. is absorbed in the lumbar spine. I guess it makes sense that lumbar curves tend to have more pain issues. My daughter (age 21yrs) has a lumbar curve. She has had chronic backaches for years. When she was dancing as a teenager, and in better physical condition, her pain/discomfort was not as severe. Now, she realizes how much it helps to be in good physical condition. She has not had surgical correction for her 35 degree lumbar curve.

      Because Michelle has pain enough to interfere with her daily routines, I would ask/insist that they do a full spine MRI. You want to MAKE SURE you rule out any hidden spinal cord issues that may be contributing to the curve and discomfort.

      Good luck on the 22nd. I hope you can start getting answers for her and begin helping her find the right "plan". It never hurts to have more than one opinion. Maybe you can work on getting another opinion from a PEDIATRIC orthopedic surgeon/scoliosis specialist. Keep us posted.
      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/

      Comment


      • #4
        I have a c-shaped curve. I went to a chiropractor and he told me my spine lined up perfectly. I had an ortho do xrays and the curve showed up. I was 16 and it was 45 degrees. We decided on surgery and had to wait 3 months. When I went in for surgery, my curve was up to 50 degrees. Even though you are finished growing your curve isn't My daughter was diagnosed at 13 and was finished growing. Her curve was 40 degrees. A year later when she was a freshman, her curve was at 45 degrees. When she had her surgery 2 months later (we timed it for the week after school got out), her curve was 48 degrees. She is also a dancer (ballet, pointe, modern, jazz, hip hop). She had a great dance teacher in high school who worked with her limitations. Now that she is in college, she dances in company at a studio. She is physically unable to do somethings, however when you see her dance, you would not know she has 2 rods in her back. My daughter had some pain before her surgery. She noticed it on days she was very active. Now she only has pain if she over does it at dance!
        T12- L5 fusion 1975 - Rochester, NY
        2002 removal of bottom of rod and extra fusion
        3/1/11 C5-C6 disc replacement
        Daughter - T7 - L3 fusion 2004

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        • #5
          Thanks everybody for your comments and encouragement. It is good to see that we are on the right track although I am a little disappointed to hear that the curve might get worse. I'll keep you posted after our Shriners visit on January 22.

          Lisa

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