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Please please help - news at dr not what we expected!

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  • Please please help - news at dr not what we expected!

    Hi,

    Well we went to our daughter's appointment at scottish rite and thought we were getting a bed time brace (one set of xrays we brought with us showed a lumbar curve of 29°). They took their own xrays which showed a lumbar curve of 44°. We ended up being told she could either try and wear a boston bract 23 hrs a day for next 3 years, or have surgery. We were told that the chances of our daughter coming out of all of this without surgery were "slim" She is only 12, and had a risser of 0. She hasn't even started growing yet, but is about to start. We don't want to wait too long and watch the curve get worse and still have to put her through surgery anyway which is what it sounds like. We really are confused and don't know what to do. Any suggestions would be greatly appreciated.

    Thanks,

    Kim

  • #2
    i was in a similar position to your daughter and i have to say: brace

    if the brace doesn't correct the curve, it should hold it. unless her progression is huge in a matter of months, it's worth bracing to hold her curve and let her grow. plus surgery is a mental and physical trauma which i don't think kids as young as 12 should go through unless it's absolutely necessary. i was in hospital with a 12 year old girl and the word i would use to sum her up is: bewildered.

    in a way my position was fortunate. i was diagnosed at 14 with 48 and 40 degree curves, plus a risser sign of 3. i was braced and the brace corrected my thoracic curve by about 10 degrees, though once i came out of the brace my lumbar one tipped over 50. i don't know my exact correction yet but i can tell you that from seeing my xrays, it's fantastic. i waited 4 years before i was sure i wanted and needed surgery before i took the plunge. i'd also encourage you to involve your daughter. don't necessarily let her make decisions yet, but at least ensure she knows about scoliosis, all the various implications from treatments and why she's having a brace. i think a lot of people give up on them as they believe they are pointless but this opinion is misguided and i am proof of that.

    with a risser of 0, your daughter's curve should be felxible, and to let her grow and give her the best chance of correction and minimal progression, i'd say go for the brace and wait and see what happens, but i'd definitely advise against doing nothing.

    if you have any more questions feel free to ask or PM me, i'd be more than happy to answer. i hope what i said makes sense
    diagnosed aged 14 (2001)
    braced from july 2001 to february 2003 to hold curves
    fused T11-L3 on july 16th 2005 (aged 18)
    Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
    scoliosis support forum

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    • #3
      Kim,

      Not to long ago I was faced with the same dilemma with my son as you are now with your daughter. when we first went to see our ortho surgeon last November (who, btw completed fellowship training at TX Scottish Rite Hosp.) he felt that based on the deg. of curves 38T/35L, age-13, risser-0, the probabilities were high that the curves would continue to progress and he recommended surgery. He also gave us the option of bracing if we wanted to try it first but said that compliance 23/7 (especially with boys) is not very good and the emotional trauma of bracing sometimes doesn't outweigh the "benefit" of prolonging surgery to gain growth. Let me clarify he wasn't recommending surgery at that point (38T/35L) but rather "watch and wait" until curves reached around 50's. After talking it over with my son, we decided not to brace, and he is scheduled for surgery in Dec. (curves in July meas. 49T/44L)

      Just wanted to give you a different perspective. Each case is different, and what happens with one may not happen with another. You could always try consulting with another doctor for a 2nd opinion. But your daughter should definitely be involved in the decision-making. There is another forum you can try www.spinekids.com - you and your daughter can talk to lots of kids and other parents to get info and exchange ideas. The girls there love to welcome new kid members. Good luck to you-

      Renee

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      • #4
        I was in almost the exact same situation this spring.

        My curves had been holding at 19/13 but then made a jump to 43/31. I was 12 too, not sure of my risser, but it was either a 1 or a 0. Anyway, I choose to get a brace. I wanted to do everything I could to prevent surgery so I would know I'd done my best if and when the time came. My brace really slowed my curve down. With the brace, my thoracic progressed 11* in four and a half months, but without it, my thoracic curve progressed 10* in one month. With a brace, you buy your daughter time before surgery and she can get some growing in.

        That's my opinion anyway

        good luck
        I'm Karin. I had surgery for my scoliosis on October 13, 2005, and am doing well! I formerly wore a providence brace and did PT for treatment.

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        • #5
          Kim,
          I think that you should try to do some research on bracing of lumbar curves. I'm pretty sure that I have read some studies that say that lumbar curves don't always respond well to bracing. Just a thought...
          Cathy

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          • #6
            My daughter's case is somewhat similar in that she started 2 years ago with a 45 degree curve. She used a brace for nearly 2 years, then had surgery. The doctors and us feel the brace helped her get a little more height in her spine before the curvature became extreme. She had surgery at 75 degree, and is now greatly improved. If I had it to do again, I would look into Shriners from the start for all the treatment, including the brace. I just paid the last payment on the brace this week. It cost us $1,000+, since our insurance deductible is so high. Good luck and God bless you in your research and decisions! Kris

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