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  • Surgery on chronically ill child

    Hello. My names is Melanie and I am new to the group and have a question regarding surgery on my daughter Skylar, who is an unhealthy 14 year old girl. My daughter is at 62 degrees Kyphosis and 24 degrees scoliosis. We were told that we will be discussing surgery at 70 degrees which isn't far off. Skylar was at 42 degrees in April 06' and 62 degrees by Nov 06. I will try to give you a quick summary of her health. We discovered Skylar had a brain tumor which was removed 2 years ago. During surgery Skylar suffered a massive stroke affecting her left side. She is able to walk with assistance but mosting in a wheelchair. Skylar had an extensive recovery period and has many medical issues now. Diabetes, hypertension, Tachycardia, Panhypotituitarism (no function of her pituitary gland), a rare blood clotting disorder, ostephorosis, narcolepsy, sleep apnea, etc...(but these I believe are the things I'm mostly concerned about during surgery. Her ortho said it can be done even though she is a very complicated case. All of her other Dr's would have to give permission and work closely on this with her ortho.

    My questions are: Has anyone had anything remotely close to this with a good outcome? How long is recovery? What questions should I ask the ortho or other Dr's? Should we wait longer then 70 degrees because she might not make it through the surgery? I've been told we may have no choice because it will affect her breathing.

    Also, I don't know what bearing this has, but Skylar who already spent 5 months in the hospital after her brain surgery, recovered enough to go back to school 9 months post-op. Skylar was in her wheelchair in the back of the bus, the driver became airborne and when landed Skylar broke her back in Aug 05' It was a compression fracture of the T-12 vertabrae. She was in a back brace until April 06'. Her back has steadily gotten worse since this incident. We were told that the Boston brace?? probably wouldn't do any good at this point and just add to Skylar's pain.

    Sorry this is so long but I need to start preparing myself for what lies ahead. Thank you,
    Melanie

  • #2
    Hi Melanie...

    I'm really sorry to hear about your daughter's medical problems. She certainly has more than her fair share!

    Good for you for asking the questions now. I'm not sure that I can be of much help, but I would encourage you to get a second opinion. I would want to know for certain that there is nothing other than surgery that will stop the progression of her kyphosis, especially since Skylar has so many other problems.

    Best of luck with your search.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      Hi Linda,
      I have already gotten 4 opinions. I got on it right away. I also wanted to know about the best surgeon to do the surgery, we have a new one at our hospital (Children's Hospital of Michigan) and don't know him. But he came highly recommended, and one of my daughter's other Dr's said we really have no choice but to have it at Children's because that's where all of her other specialists are. So I have to agree with him about that. But yes, we were told that surgery is the only way to correct it....and that nothing will stop the progression. Although her ortho recommended Yoga and stomach strengthening exercises, Skylar would never be able to do that without straining her back because of her left sided paralysis.
      Thank you,
      Melanie

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      • #4
        Hi Mel. Things happen in life to certainly test us dont they and you ,your daughter and family have certainly had more than your fair share.

        My son had diabetes (hes 31now) and an operation with that alone can be a little dicey.

        You said you havent met the new surgeon yet at the childrens hospital. I would write down as many questions that are worrying you and ask him the lot of them. You have to feel satisfied Mel within your own heart dear, and all I can do in the mean time is pray for you all.

        God bless you all
        Macky
        Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
        Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

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        • #5
          Hi Macky,
          No we did meet her surgeon, I just don't know him?? He's new to the hospital, but I have heard he is a really good pediatric orthopedic surgeon. Skylar use to see another ortho there, but he left (he is one that I got another opinion from). Yes, the diabetes is a scary thing along with all of her other issues. She is on blood thinners for a clotting disorder. So there is a long list of things I'm worried about. You said they aren't able to redo your surgery because of your age? Is there a limited amount of surgeries that can be performed? I'm sorry to hear about the pain your in! I just don't know too much about this type of surgery, how well it turns out, pain afterwards, recovery. Hopefully this group will help me learn more.

          Thanks!
          Melanie

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          • #6
            Hi Melanie,

            Kyphosis surgery is scary enough without all the other health issues you are dealing with. You are doing the right thing by gettting several opinions and asking tons of questions. Keep up the good work.

            Has anyone suggested a Milwaukee brace for your daughter? My 15 y.o. daughter has both Kyphosis and Scoliosis (no other health issues) and when she was first diagnosed, she was prescribed a Milwaukee brace. When she wouldn't wear it, she was prescribed a Boston brace with an extra piece added to the front to push the Kyphosis. She wouldn't wear that either and her Kyphosis and Scoliosis increased to the point of needing surgery. She is now 2 years post-op. At the time of surgery her Kyphosis was 71* and corrected down to about 33*. I must say, a Milwaukee brace is very difficult to wear for a lot of people. It might be an option to try to hold the curve where it is.

            Jamie's recovery was relatively quick. Back at school 1/2 days at about 4 weeks; full-time at 6 weeks.

            Sorry I don't have time to answer all of your questions right now. Feel free to e-mail me at Spinesupport05@aol.com or reply here if there is anything else I can help with.

            Hang in there,
            Mary Lou
            Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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            • #7
              Hi Mel, gee Skylar is such a beautiful name. One excellent thing is you will be helped no end by this forum. The people here are so supportive and we all understand.

              I could have had surgeries honey even still could actually, so I really should change that. I have since learnt differently on here. Where I live there is extremely limited Revision surgeons who could help me. I cope OK though. It gets me down sometimes and thats when I get on here and when I read about what you are going through I realise how very lucky I am.

              You are so kind to be concerned about me. I will continue to pray for you and honestly you never know what you may learn from the other people on this forum, such as Snoopy and she is only one example of great advice.

              God bless,
              Macky xx
              Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
              Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

              Comment


              • #8
                Hi Mary Lou,
                We were told about the Boston brace but they don't feel that Skylar would tolerate it. I heard these braces are bad enough but being in a wheelchair they said it would be too uncomfortable. Your daughter had a good correction. Do they say how successful it is? How long does it last?

                Thanks,
                Melanie

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                • #9
                  Hi Macky,
                  Thanks so much for the compliment (Skylar's name). Well, I will keep checking back hear to see what more I can learn. Should I visit any other sites?

                  Melanie

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                  • #10
                    Melanie,


                    I guess it would be very uncomfortable to wear a brace while in a wheelchair. I just mentioned it to make sure you've covered all your options.

                    Jamie's doctor was very pleased with the amount of correction he was able to get for her. As to how long it will last, I don't know. About a year after her surgery, she developed what the doctor calls "junctional Kyphosis" which is a curve above her fusion. The doctor told us before surgery that this sometimes happens. As for the fusion, she hasn't lost any correction and it has been 2 years since her surgery.

                    Mary Lou
                    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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