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worried Mom from Massachusetts

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  • worried Mom from Massachusetts

    Hi -
    My son has kyphosis and hyper-lordosis - curve 70+ degrees. He is headed to surgery anterior/posterior spinal fusion in December, 2004. I am looking to talk to anyone who has had this surgery...the odds are not very comforting - 1 in 50 suffer paralysis...1in 30 require another spinal fusion...
    He is 14 years old...at first he refused the surgery - now he is accepting it though we are very frightened.
    Has anyone had surgery in Boston...we have two surgeons - one to perform the anterior and another to perform the posterior...they will be done on two seperate days? I really need to talk to someone about this...what does it feel like after its done? what is post-op like? They anticipate that he'll be in the hospital at least 10 days - and 6 to 8 weeks at home? What was it like after surgery? How do you prepare for surgery?
    I have so many questions...I'm so tired - already...I'd appreciate any response. Thanks.
    Pat

  • #2
    Hi Pat..

    We find ourselves in the same boat. My daughter, who will be thirteen in a few weeks, is probably looking at surgery this fall. We are getting our fourth opinion on Thursday with one of the best orthopedic surgeons (so I'm told) in the world. My daughter has 79* Kyphosis and 36* Scoliosis at last check. Why anterior/postier surgery? Our first doctor mentioned only postier surgery. Have you had a second opinion yet? I'm very curious as to what this new doctor says. Best of luck to you and your son.

    Mary Lou

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    • #3
      Hi,
      Thank you for replying to my message. I also have been told I have the best surgeon in the US - funny how that happens isn't it? I also have received 4 opinions on Mark and all of them are directing me to surgery. Regarding your question about both anterior and posterior - as I understand it and through the research I have done, better results are achieved with the anterior release and the posterior fusion. The first doctor we went to wanted to just go with the pedicle skrews and do only a posterior fusion, however the doctors at Boston Children's Hospital are recommending both anterior and posterior. Since they are suppose to be the best in the country we're doing what they are recommending. The first surgeon we spoke to - this would have been his first surgery...so, he won't be doing it - I am going to have him assist though if he wants to...
      Are you as much as a wreck as I am? The risk factors seem to be much higher for people who have kyphosis - it's scary to me. How does your daughter feel about all of this? Have you ever gone through anything like this before? Have you spoken to anyone else with kyphosis? Will they talk to me? Well, we pray for everyone going through this...it is so hard and frightening...just got to try to go with the flow. Thanks for responding and I hope you continue to write.

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      • #4
        Oh Mary Lou,
        I forgot to ask you about what hospital you were going to and who the surgeon was who you are seeing on Thursday.
        Has your daughter been braced yet?
        Mark was in a Milwaukee brace at night and a Boston brace during the day for the last year...they say he has now become more rigid and the braces won't help him anymore. He continues to wear his brace because of pain...is your daughter experiencing any pain?
        Okay, hope to hear from you and good luck to you to.

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        • #5
          Hi Giggles...
          I will try to answer some of your questions. You asked if we are a nervous wreck, like you--somewhat. I've been having a lot of heartburn lately and I know why. We haven't been told yet when surgery will be, but my husband and I know we want surgery a.s.a.p. for our daughter. We've seen her back get worse and worse over the past few months. My daughter doesn't complain about pain. She tried wearing a Milwaukee brace and didn't do well so they switched her to a Boston brace and didn't do well in that either. We've been seeing doctors at Penn State Children's Hospital (Hershey, PA) and will be seeing Dr. Randal Betz at the Shriner's in Philadelphia on Thursday.
          I hope I answered some of your questions. I am in contact with a few people who's children have Kyphosis, but most of them are still in braces and not facing surgery at this point. However, there is a teenage boy on this forum, goes by the name Matt...check out some of his posts. Best of luck.
          Mary Lou

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          • #6
            Hi,
            I can't be of much help, though I can answer one question for you. My daughter, Amber, had a double fusion 10 1/2 weeks ago. She was 'minutes' away from surgery and the lead surgeon came to discuss the option of anterior surgery as well. This was because her L4 and L5 were at a 45 degree rotation and she was starting to stiffen. The reason was that they would be able to get into the area better and therefore get a better correction. In the end they only did posterior surgery.
            Earlier on they had explained to me the reasons why they may need to do anterior surgery and the other reason was that if the curves have stiffened too much they may need to shave the front edges of the vertebrae to allow correction.
            We were told that for Amber to have this type of surgery would mean two seperate operations a week or so apart as it would take too long to do in one go.
            I don't know if I have helped any, maybe you have already been told that or your surgeons have other reasons.
            Best wishes.
            Cheryl.

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            • #7
              Hi Pat,

              I think I can help answer some of the questions you have because your son is in almost the exact situation I was in 2years ago. I had kyphosis with a curve that was around 80 or so. I wore a milwaukee brace at night for 6 months but it didn't help so i opted to have surgery in July 2002. I had my posterior/anterior surgeries at Children's Boston and my doctors were Emans and Hedequist.

              I stayed in the hospital for 9 days post op. I remember being on lots of pain killers and not being able to remeber alot for the first couple of days. The nurses had me change positions (right side, flat on back, left side) alot. 2 or 3 days after surgery they had me get out of bed and walk. I remember being thirsty alot, you should bring some gatorade because water gets boring after a while.

              At home i stayed in bed and watched tv a lot. Then in september i attempted to go to school but for the first 2-3 weeks I was only able to attend for half the day because it was uncomfortable sitting for that long.

              I know I can tell you more but i can remember everything right now so I'll write more later. I you have more questions i'll be happy to answer them.

              Brian
              email- Bfh86@aol.com
              AIM- BFH86
              Last edited by brian86; 08-05-2004, 08:04 PM.

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