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  • I'm new, DD just got diagnoised yesterday

    Hello everyone,

    My daughter was officially diagnoised yesterday and what a shock to us it was to find out her middle curve was already at 42 degrees. She has a top curve that is 23 degrees and a bottom one that is 24 degrees also but it's the 42 degree that jumps out at you.

    She is 12. My husband has scolosis, so the fact that she had it didn't surprise us. What DID surprise us was how bad it actually is already. Last year our family doctor noticed it but said to wait and see if it got worse, this year he said it progressed so sent us to a specialist. What I'm annoyed at is I didn't catch it earlier even though we had been having her checked. One thing with my DH is that nothing was done because it was caught too late, they told him they could brace him but it wouldn't do any good, so basically it was just left as is. I didn't want the same thing to happen to our kids and yet, it looks like I waited too long (although at least we did catch it earlier than his was caught).

    We had our specialist appointment yesterday...in my head I was expecting a "yes she has a curve and we need to brace" what I GOT was Yes she has a curve and she is probably going to need surgery since she is already at a 42 degree and a risser of 0 (she was happy to hear she still had a lot of growth left to do since she is short! ). He has referred us to the Shriners, he wrote us a referral letter and I called to get the application process started. I hope it works out and we are accepted. My head has basically been spinning ever since trying to wrap my head around things.

    She's also a gymnast so that kind of came into play thinking how things will affect that.

    What the specialist said was what may happen is they will try to brace her for awhile but it looks like surgery will be in the future.

    Becky
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

  • #2
    Hi Becky,

    First, take a few deep breaths. Scoliosis is rarely an emergent situation. You have time to research and find the right options for your daughter. You mentioned you saw a "specialist" yesterday, yet the "specialist" is referring you to Shriners. What "specialist" did you see? Please make sure you get the facts before panicking about surgery sooner than later. Since her Risser is zero still, please consider other options before fusion surgery. Fusion is such a final thing. Fusion on an immature spine can have future risks. Do you have an appointment with Shriners? Where do you live? People here can give you suggestions on great pediatric orthopedic surgeons in your area. If you have to travel for treatment, that is do-able too.
    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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    • #3
      Becky, Like Carmell said "Take a deep breath". We all know the shock you are feeling. We had appointments for all three of our daughters and found that they all three have kyphosis/scoliosis. That was a huge shock for one day. But, we dealt with it. Our oldest daugther had surgery at 15 yrs old and had a beautiful straight back. Our youngest daughter wore a brace for almost two years, and is now on annual x-rays to be sure things are staying put, our middle daugther is a wait and watch and is now 16. She has an appointment with her doctor at the Shriners Outreach Clinic in our area this Saturday. It's pretty nerve racking to me, as she says that she won't have surgery if it ever came to that. She says she is to active in sports and isn't willing to sit them out. So, I pray a lot that her back doesn't get any worse.

      The doctors at all of the Shriner Hospitals are incredible. We loved our girls doctor. He was incredible when it came time for our oldests surgery. When she had her appointment with him the day before her surgery, he talked to her and wanted to ease any concerns she had. Of course, her concerns were our concerns. But, the fact that he talked to her about her fears was incredible.

      You should hear from Shriners within 4-6 weeks. They are very busy, so don't get discouraged. The thing to remember with Shriners is that they are an othropedic hopsital, they don't treat sick children. If you child has the flu or a cold, they don't even want them at the hospital. What amazed me was when Crystal was in the hospital for surgery I noticed something. When the kids feel good enough to horse around, as long as they were being safe, they let the kids be kids.

      Anyhow, enough of my rambling. Take that deep breath and relax. It is scary, but something you learn to deal with. We've all been in your shoes and will be here to hold your hand and lean on.

      Nikki

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      • #4
        Originally posted by Carmell
        Hi Becky,
        You mentioned you saw a "specialist" yesterday, yet the "specialist" is referring you to Shriners. What "specialist" did you see?
        It was an orthopedic surgeon that our family doctor recommended.

        Originally posted by Carmell
        Do you have an appointment with Shriners? Where do you live? People here can give you suggestions on great pediatric orthopedic surgeons in your area. If you have to travel for treatment, that is do-able too.
        I will definitely look at alternatives, especially since she does have a lot of growing to do. I'm in the Chicago area.
        Becky
        Mom to DD (15) with S 48*+ curve
        Had her surgery March 9, 2009

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        • #5
          Originally posted by nikyergen
          You should hear from Shriners within 4-6 weeks. They are very busy, so don't get discouraged.

          Nikki
          Thank you. I figured they would be very busy and it would take awhile.
          Becky
          Mom to DD (15) with S 48*+ curve
          Had her surgery March 9, 2009

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          • #6
            hey

            Hey i am 13 years old and i was diagnosed with idopathic scoliosis just over the summer.My curve is at 30.I am wearing a brace at night.We were lucky to catch my curve at 30 degrees.We just got into a study and its somthing like 2 see if the blood flow is faster wear the curve is.So yea i really dont know how to explain it.Sorry if you want to know more about tell me and ill have my mom type you.See i have a twin sister and she has the same exact curve degree and everything.So she is wearing a brace as well.It is pretty weird that we both have scoliosis.We are hoping that the brace will stop the curve at 30 so we wont need surgrey.We have alot of growing ahead of us.Especially since we are going through puberty.Also my sister and I are doing pilates.MY docter says (if god forbid these girls had to get surgrey,the would be a little but stronger in there back so surgrey would be less stressful)So mabe you should consider pilates or physical threpy.Well...hope this helps

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