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is it true the longer you wait the harder the surgery?

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  • is it true the longer you wait the harder the surgery?

    We just learned that our 14 yr. old daughter Erica has Scoliosis- 52'L and 34'T. We have gone to 2 Dr's so far, and have 3 different measurements (52-58L and 34-40 T)

    At this time the fusion will be L1-L5.We are still waiting on the MRI results to see how involved the sacrum is and this seems to determine if she is fused to there.

    Erica is scheduled for July 30th in Chicago, and I think I am doing the right thing for her and her future... am I right?

    She is in no pain, and I feel like I am signing her up for a life of pain. On the other hand, everything I read says she will continue to get worse, and therefore I imagine the surgery will as well-and the best thing I could do is get her to where she does not have to worry about continued progression, where we can fuse less of her spine and allow for her younger self to heal.

    By far the very hardest decision I have ever had to make (and for someone that I love so very much) ...

    no pain, no symptoms (except uneven shoulders and a rib hump) to a spinal fusion. Any input would be greatly appreciated- thanks for reading

    Laura

  • #2
    If your daughter is not in pain I would make her have surgery. The curve sizes are not dangerous. This is a big surgery - it is painful and a it is a long recovery. Also a lot of people that had the surgery need to have another one.
    I am 4 months post op and I have to have another surgery . At my last doctor visit my spine moved - so he has to go back in.

    Sue

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    • #3
      Laura,

      Did you say whether she was still growing and what they thought her curves would be in the future. I totally understand how you feel. My daughter looks great until you look real close up at her back. She is healthy and active and doesn't complain much of pain. Read about her in my signature. Sometimes I want to just say, "No, I will not put you through this." I want to protect her from the surgery. But I read the posts of these women my age and I think that will be her life. Curves in the 60's and 70's, pain all the time, and facing surgery while juggling a job and children.

      Dr. Rivard in Montreal is one of the most conservative surgeons I know. He doesn't believe in fusion until at least 50 degrees. When he saw that Nicole had progressed rapidly and was still a risser 0, he said surgery.

      If your daughter could stay where she is for the rest of her life, she could be okay. But what do they believe her curves will be in 10, 20, 30 years?

      I understand completely how you are feeling.
      Melissa
      From Bucks County, Pa., USA

      Mom to Matthew,19, Jessica, 17, and Nicole, 14
      Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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      • #4
        Thank you Melissa and Sue for your response- her risser is at 4- she may have one more spurt, yet they say she will continue to progress,and even waiting until next year seems to indicate further fusion and less mobility. It makes me feel better when I can see others are facing this horrible decision and conflict that faces us- I believe the pain and side affects are around the corner either way, or so it seems.

        Sue, oh my, I am so sorry you are already facing another surgery- how old are you and how long have you been struggling with this, and why another surgery? When you say your spine moved....what does that mean?

        Melissa, all the data says she has a 90% change of pergressing 1-5' per year, and that kind of math says she could be at 90' in 10 years, youza..And I guess alot will be determined with this mri and the sacrum deal- if it turns out to be a congenital deformity that has caused this, and then who know what else that means-

        Are your other kids affected? I mean with Scoliosis? We had my others checked out, and thankfully, they are fine.

        Thanks again for your notes- is there a place on this forum you can register your surgery date for the kids? I would love to have all this positive feedback for Erica to read- at this point, she has not reached out to anybody at all, and that worries me also-

        Comment


        • #5
          Hi Laura

          I can totally sympathize, I've been struggling with this decision for several months, I'm heartbroken over this. I was just telling Melissa a few days ago, the hardest part of this whole experience is putting my daughter, who is otherwise healthy and relatively pain free, through such a drastic and life-changing surgery. But, as I said, relatively pain-free. She is already experiencing some problems, especially when shopping, she gets fatigued easily and her back will start to hurt, so I can imagine in 10 years how many problems she would have. Her symptoms are definitely increasing with age/magnitude of curve (not sure which is the main factor, probably curve magnitude).

          In my daughter's case, both curves are of nearly equal magnitude, thus the long fusion. I think you're probably right, getting it done now vs. later, may possibly save your daughter from having the thoracic area fused assuming the curves will progress as predicted. Also, I think even if her (your daughter) curves stayed exactly where they're at, she would probably have pain issues anyways later on. Sometimes, I feel like it's a no-win situation.

          I hope and pray our kids will have a successful surgery and live normal, healthy lives. That's all we want as parents, right?

          About your signature, you can go to the User CP at the top of the page and go to signature and put whatever you want to show everytime you post.

          Take care

          Comment


          • #6
            Hi Laura,

            Have you discovered spinekids.com yet? If not you AND your daughter should check it out. This very safe site has lots of scoli kids on for your daughter to chat with. Although my son doesn't go on to spinekids as much as other kids do if he had a question there seemed to be a lot of support. Even just knowing there are others out there going through the same thing as they are was good for him.
            Feel free to ask any questions you may have and good luck with all.

            Ramona
            mom of Patrick, age 15 at time of surgery
            diagnosed July 2006 curves T58 L 38

            Nov. 2006 curves T72 L38
            also lordoscoliosis

            feb.2007 curves T79 L43

            Surgery May 16 2007
            fused T4 to L1

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            • #7
              Thanks so much for your responses- wow Ramona, that is FAST progression for your son...how did surgery go? How is he doing?

              Cherie, thanks for your note- it really helps me feel better that I am making the right decision-please keep me posted on how you are all doing-

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              • #8
                Hi Laura
                I just found out today I have a staph infection in between the two disc that looked like they moved. I need a surgery to remove the infection and another surgery to remove some screws that will be placed in L5 disc for stability because L3 & L4 have tobe removed because of the infection.

                I am 4 months post op. I am 44 years old and had scoliosis since around 12. My 13 year old daughter has scoliosis too, but she wears a brace and has a very small curve, hopefully it will stay that way.

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                • #9
                  Hi Suzy, I am so sorry to hear of all you are going thru- sounds absolutely horrible. Do you ever wish you had done this when you were younger? I understand surgery is the last resort, but all the research tells me if we do not do this now, we will have to do it later- and 2 more surgery's? Oh my..I cannot even begin to imagine the pain you are in.

                  I am also sorry to hear about your daughter and my prayers for her curve to stop progressing-forever.

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                  • #10
                    I don't think having surgery when I was younger would make a difference, for me. If I had the surgery when I was younger they would used the Harrington rods and I have read that many people who have had Harrington rods inserted have problems and had to have a second surgery to replace the rods. I don't think the infection has anything to do with age.

                    Thank you

                    Sue

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                    • #11
                      Dear Suzy, my prayers are with you for a full recovery and hopefully the pain will subside soon- I am so sad and sorry to hear what you are going thru- Laura

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