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  • #31
    Dear TiarnansMom,

    Hi, and thank you for your note. I have been asking tons of questions and every mother here on this forum have been wonderful and full of good information. I really hope your son is doing better. My daughter will have her surgery August 11, 2004.
    Take care and again, I hope your son is doing better.
    Worried Mom

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    • #32
      Hi Mumof5, Nanmccone, Peggy, Choliesmom, Carmell, TiarnansMom, Paulasue2,

      I hope you all receive this message. I don't know if I'll go on again prior to my daughter's surgery. It's so close and I'm a bundle of nerves at the moment, but I wanted to let all of you know the good news.
      The surgeon called me two days ago and he reviewed the case with his partner again and found the risk to be so slight as to NOT to have the Anterior portion of this operation and just the posterior. I asked him, oh, maybe 40 more questions up and back and percentage of the risk vs. benefit. I agreed to just the posterior, which of course, reduces the operation time, transfusions, and the possibility of a second surgery within the week of the first one, if she didn't hold up for the front and back. My prayers are being answered and I'm so pleased to tell "my support team", all of you, the good news. Of course, we will see what happens. To summarize, the risk of possible failure in instrumentation with just posterior jumped from 2 percent to 7-8 percent within 6-9 months that something may come loose, but that also means that she has a 92 percent chance that it won't. Also, he hopes to bring the 78 percent curve to 30 percent (maybe less) with posterior alone. The anterior/posterior would have brought it to 20-25 percent, so for another 5-10 percent, I still felt the risk was fine. This did not mean further fusion, additional fusion on any level, etc. Please pray all will go well. I carry each and everyone of you in my heart and thank God you are there for advice and comfort and this site has been wonderful for me. Take care. I will follow up when I can.
      Worriedmom

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      • #33
        That is wonderful news. It's a lot less for you to worry about. For that much difference in correction I would have gone posterior only as well.
        Good luck with the surgery. I'm sure everything will go well.
        Best wishes.
        Cheryl.

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        • #34
          Mum of 5

          Thanks. I'm so nervous. The clock is ticking and it's only a few days away. I'll update when I have the chance.
          Worried Mom

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          • #35
            Surgery September 1

            Hello all, I have been reading many posts for 4 months now and I am so overwhelmed! Everyone is so supportive and I thank you all in advance. My daughter Jessika is 12 1/2 and having spinal fussion surgery September 1. She is disabled. Prader Willi Syndrome, mental retardation and slightly Autistic. She is actually excited about surgery. I am worried that she will have a tantrum in the hospital or when we come home and harm herself. Is there help at home? The hospital told me that the discharge nurse will take care of things. So, I wait untill we are about to leave the hospital? Also, how long is the stay? I read that some people take Iron pills, her Dr. never mentioned it. I do not know what Jessika's lung capacity is, but she is not that active. (favorite things are Math workbooks and puzzles! ) She is my sunshine and I want to make sure that this is all right. Her curves are 62 and 40. We have gone to 4 different Dr.'s and they have all said surgery. Jessika takes Growth Hormone injections nightly to improve her muscle tone. Any advice will be greatly apreciated!

            Thank you! ~Jeannie

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            • #36
              Hi Jeanine

              It's pretty late at night where I am; so I'm sorry if what I write doesn't make sense or is a bit brief (I'll add to it later :-)

              :The hospital is used to dealing with "standard" fusion patients, what I mean by this is a patient who is "normal" (in the sense of the word) and who doesn't have any other condition and that only standard things need to be thought about (can they shower ok, do they need a toilet seat raiser, what pain medication will they need etc). I believe that with Jessika's special needs you need to start "planning" now about when Jessika comes home. Could you liase with Jessika's "support team" (doctors, therapists , OT's etc) to come up with an overall game plan for when she comes home. Also to help work on Jessika's understanding of what it will be like when she comes home from surgery to the level that she can understand.

              :Iron pills are often prescribed before (or in some cases after surgery), it is to increase or replenish the haemoglobbin in the body from what is lost in surgery. However it often depends on the individual patients case and the choice of the doctor. You might want to ask the doctor if they are needed in your daughter's case.

              :The length of stay depends on lots of factors, the amount of surgery (just posterior or anterior and posterior), the patient's recovery. It is usually about a week to 10 days but it does very from person to person (often 4 days in high dependency care then the rest in "standard" care)

              :Just thinking, is a test to test Jessika's lung capacity coming up, it is done to see what the patients lungs are like before surgery and to get baselines for in the theatre, (and its done regardless of activity or inactivity of the patient) and I would find it unusual that it's not being done.

              I hope some of this helps

              Alison

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              • #37
                Jessica's surgery is over

                Dear Mumof5, Nanmccone, Peggy Sholiesmom, Carmell, Tiarnans Mom, Paulasue2

                At last, Jessica's surgery is over. All of your advice was so helpful. The surgery was 9-10 hours. I was shocked when the surgeon, who only promised me 30 percent from the 78 percent curve, brought her spine to 15 percent. He has hands of gold. she is going through all that you have previously described. Sitting seems to be the worse problem at the moment. She's getting better every day. They put her out from school for 6 weeks, but of course, if she is able to tolerate it, I'd like to send her in for half days. I had previsouly told her new teacher the problem and the principal, but we learned over the summer, that the principal resigned, so isn't that nice! I'm sure it will all work out. Jess is bored to death with TV, gameboy, cardgames, etc., which is only proving to modivate her to do the physical therapy more. She will be going two times per week until October 1st. The therapist feels she will need more, but I will check with the surgeon during our 6 week check up and find out more. Could you get back to me and tell me about the scar cream and if it really works? I could really use this information. Thanks to all of you and this site for bringing us to sanity in the mist of horror.
                Pat

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                • #38
                  Congratulations on the successful surgery and wonderful result. We have been using 'emu oil' on Amber's scar. (Occassionally). Amber likes her scar and doesn't want it to fade. It is healing really well even though she won't let me do much to it.
                  I hope that things keep going well for Jessica.
                  Best wishes.
                  Cheryl.

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                  • #39
                    Dear Choliesmom,

                    I don't know if you read how my daughter's surgery came out. Excellent. I responded to all of you on page 3 of this thread page. Please let me know if you received. Also, when, in October, is the surgery?
                    Worried mom

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