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  • new to forum, daughter's surgery 12/8

    Hi, I am new to the forum but I have been reading it for some time. It has been so helpful. My daughter, 14, is scheduled for surgery 12/8. She has a 47* thorocolumbar curve. She was first diagnosed two years ago at 33*, wore a brace for a little over a year that seemed to hold it. When she stopped with the brace, it progressed 14* in six months even though she had stopped growing. Her surgeon is planning to fuse T12-L3, possibly L4. He is not trying to completely correct the curve - something like 50% -as she has a tilted pelvis and difference in leg lengths and needs some curve to balance those issues. It sounds like her fusion will be much shorter than what most patients I read about here seem to be getting. We discussed both anterior and posterior, drs think they are equally good options in her case. We opted for posterior. I am worried about her flexibility after surgery for the rest of her life. Dr says she won't be able to do situps (but crunches yes) or arch her back. She might be able to touch her toes, or close, or she might not be able to bend like that. Does anyone have experience with fusion in this T12-L3/4 area?

    I am really worried about everything right now. We could wait another 6 months or year and see what happens, but dr thinks it is definitely progressive and eventually will need surgery. We did get a second opinion who was in agreement with our surgeon on all issues. My daughter wants to get it over with and move on. I am so torn and worried, of course, about all the things that could go wrong. Even if all goes right, I am worried about her pain through the recovery. Thank you for listening, and any feedback will be much appreciated.

  • #2
    Welcome.

    Of course you are worried--you wouldn't be human if you weren't. The good news is that although fusion is more than major surgery, statistics show the risk, especially for children, is very small.

    My son was fused at age 13, 11.5 months ago. He has a very long (posterior) fusion--T2-L4. I, too was worried about flexibility. He is unable to touch his toes now, but he couldn't do it before surgery, either, because of tight hamstrings. One thing that helped me know what is possible is that right after the surgery, while waiting for a copy of my son's x-rays, I ran into a young woman who had been fused 3 years earlier--same levels as my son. When I asked her about flexibility, she leaned over and touched the floor. She says she has to work at it, but she can do many of the yoga postures she could do before surgery.

    My son was back in school in about 4 weeks and off pain medication after 2 weeks, but everyone is different. What I think is typical is that teenagers bounce back remarkably quickly. The first two or three weeks can be rough, but they seem to gain every day.

    This forum is a great place to get your questions answered and prepare yourself--so ask away.

    Mary Ellen

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    • #3
      Hi jjsmom - I'm going through this too. My daughter is needing a very similar fusion T-11 - L-3. Dr. wants to do surgery sooner then later, but we just saw him last week and have not set the date yet.

      I understand your worry - It took me a while to even read this forum after the news of pending surgery last year, but have found the people here are remarkable with support and knowledge (the kind I needed - been there -done it - this is how it went).

      I don't have the experience of going through surgery, but totally understand where your at now. Best to you, your daughter and your family as you proceed through this. I think this is the hardest time during this whole process.

      Dee
      Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
      Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
      Jes (20yo) T 3 -> L 3 w/ Kyphosis

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      • #4
        Mary Ellen and Dee, thank you for your replies. It is so helpful to hear from others who have gone through this or are going through it. I'm sure I will have more questions as we get closer to the date. My biggest job right now is to calm down and keep myself together so I can really be there for Julia.
        Thanks for the kindness and support.

        Barbara

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        • #5
          Welcome to the forum. Posting to this forum has really helped me with my daughter's surgery. Everyone who have answered my post have been really helpful.

          As mothers we are naturally going to worry. I know I have worried about every little thing.

          I will be thinking of you and your daughter.

          Charlene

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          • #6
            Welcome to the forum as well. My dd was fused 6 1/2 wks. ago and is doing very well.

            It is a big worry, but once it is done, then you can focus on recovery.

            My biggest concern was my dd's reactions to medications--she has documented medication allergies.

            But she did just great with all of the antibiotics/pain meds/etc. that she had before and after surgery.

            This is a great group for support. Feel free to ask away.

            Marian

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