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Thread: Growing Rods - Advice for Post-Surgery Care Please ?

  1. #1
    Join Date
    May 2005
    Location
    UK
    Posts
    26

    Growing Rods - Advice for Post-Surgery Care Please ?

    My daughter Emma is nearly 8 yrs old. She has been braced for nearly 5 years, but her curve has now started to progress too quickly. Her Ortho Consultant (at Great Ormond St Hospital in London), has booked surgery to insert "growing rods" in 2-3 months time.

    Naturally I'm very jittery about this (though keeping a calm face to her). Emma is also hemiplegic (so her arm and leg strength is weak), she can walk but sometimes needs a wheelchair for back-up during long outings, she also has Aspergers, so her pain/discomfort threshold is very low.

    The hospital information site, says the op will entail a 7-10 day hospital stay (if no complications), followed by 4-6 weeks off school, then a week or 2 of half days, with no PE for 3-6 months. I've advised the school, and have suggested they involve her OT & Physio, to gain advice about seating, bending etc.

    Some questions I hope you can help me with ?

    1) We live over 200 miles from the hospital (I can't drive). Will it be okay to bring her home from hospital by train ? If so will she be able to transfer from her wheelchair to a seat, or would it be better for her to stay in the wheelchair?

    2) During the 4-6 week post-op period, will she be able to get to her bedroom upstairs, or should a bed be made up for her downstairs ?

    3) Will she be ok to sit at our desktop PC (she adores the PC) ?, if not I might try and get a little laptop for her.

    4) The hospital site said they will organise a community nurse to call to check wound-site etc. Is there likely to be pain relief medication provided ? Would it be available in non-tablet form (she can't swallow tablets) ?

    5) I understand that "growing rods" need to be adjusted every 3-6 months. How is this done ? Does it involve new surgery and hospital stays every time ?

    6) I believe that she will need to stay in brace after surgery, will the operation mean that she can eventually "lose" the brace (which she hates) ? If so, how long is it likely to be until the brace is no longer needed ?

    Apologies for all these questions, but in the UK NHS service you get very little face-to face time with your consultant, and when he informed me about the need for the op, I wasn't expecting it, so had no questions prepared.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795
    Hi mum...

    Quote Originally Posted by emmasmum View Post

    1) We live over 200 miles from the hospital (I can't drive). Will it be okay to bring her home from hospital by train ? If so will she be able to transfer from her wheelchair to a seat, or would it be better for her to stay in the wheelchair?
    You should definitely check with Emma's surgeon, but I'm thinking that a train, unless it has a very smooth ride, would be too bouncy to be comfortable. In the first months following my surgery, I hated being driven over bumps and potholes in the road.
    Quote Originally Posted by emmasmum View Post
    2) During the 4-6 week post-op period, will she be able to get to her bedroom upstairs, or should a bed be made up for her downstairs ?
    Her back shouldn't keep her from climbing stairs, although it will be slow at first.
    Quote Originally Posted by emmasmum View Post
    3) Will she be ok to sit at our desktop PC (she adores the PC) ?, if not I might try and get a little laptop for her.
    Yes, she should be able to sit, although not for long periods of time at first.
    Quote Originally Posted by emmasmum View Post
    4) The hospital site said they will organise a community nurse to call to check wound-site etc. Is there likely to be pain relief medication provided ? Would it be available in non-tablet form (she can't swallow tablets) ?
    Again, you'll need to check with the surgeon. Here in the U.S., they usually send patients home with a supply of pain medication.
    Quote Originally Posted by emmasmum View Post
    5) I understand that "growing rods" need to be adjusted every 3-6 months. How is this done ? Does it involve new surgery and hospital stays every time ?
    Yes, it involves a new surgery and hospital stay every time. The first surgery will be the hardest however. After that, I suspect the hospital stay will be less time (assuming no complications).
    Quote Originally Posted by emmasmum View Post
    6) I believe that she will need to stay in brace after surgery, will the operation mean that she can eventually "lose" the brace (which she hates) ? If so, how long is it likely to be until the brace is no longer needed ?
    I think the brace is usually a temporary thing. However, I've known of some children who were required to wear a brace for some years after surgery, because they had another curve besides the one fixed with growing rods.

    Good luck!

    Regards,
    Linda

  3. #3
    Join Date
    May 2005
    Location
    UK
    Posts
    26
    Thank you for all the very helpful info Linda.

    I've also been directed to the hospital patient advice & liason service (PALS), which might also be able to offer additional info.

    Are there any links anyone could suggest, to tell me more about "growing rods" ?

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795

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