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Thread: Insertion of growth rod

  1. #31
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    Default Re: Insertion of growth rod

    well im quite small though and he basically said that my body would not grow if i dont have surgery .. i am really worried do you no what they would do about tablets because i dont take them there my fear?

  2. #32
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    Default Re: Insertion of growth rod

    I'm sure you will be able to have liquid medication. Just discuss it with them when you go for your pre-op tests.

    Rachie x
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  3. #33
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    Default Re: Insertion of growth rod

    My mum wrote a diary of my first time in Hospital, that was nearly 15 years ago now! I still love to read it sometimes.

    I had the 2 stage op (first one to remove some intervertebral discs then week later to insert the rod) at age 7 so was in hospital for 16 days. After that I had 20+ ops to lengthen or change my rod up until about the age of 17.

    You mentioned one child going home the next day after their lengthening. My record is about 8 hours, was in the OT at 8am then home by the afternoon. Changing the rods my shortest time was 3 days i think. It seemed to get shorter and shorter each time so hopefully the same will happen with your daughter!

  4. #34
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    Default Re: Insertion of growth rod

    Thank you so much for the detail, my daughter(13) is due her operation with Mr Tucker at great Ormond Street Hospital in April.She has a 70 degree + curve and will undergo fusion and Harrington rods.
    We as parents have been so desperate to know how we will feel and what we will go through.
    Our daughter just takes all in her stride, but for us the tears never stop.I worry more now about the long term of the surgery and life of the operation.
    I wish all the best to your brave family and thank you for sharing.

  5. #35
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: Insertion of growth rod

    Hi Rajeshh, good luck to your daughter, I'm being treated under Mr Tucker at the moment so I know how nice and professional he is

    By the way, it's almost certain that your daughter won't have "Harrington" rods as these have not been used for many years now, and modern rods are much more stable and successful at correcting curves. Some people still refer to all scoliosis rods generically as "Harrington Rods" because these were once the only rods that were available, so it's easy to get confused. I just thought I'd mention it though as there are specific problems that have been identified with Harrington Rods which no-longer happen with the modern hardware systems
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

  6. #36
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    Default Re: Insertion of growth rod

    Quote Originally Posted by rajeshh View Post
    Thank you so much for the detail, my daughter(13) is due her operation with Mr Tucker at great Ormond Street Hospital in April.She has a 70 degree + curve and will undergo fusion and Harrington rods.
    We as parents have been so desperate to know how we will feel and what we will go through.
    Our daughter just takes all in her stride, but for us the tears never stop.I worry more now about the long term of the surgery and life of the operation.
    I wish all the best to your brave family and thank you for sharing.
    Hi Rajeshh, you have found a great site for support. I'm glad my diary has taken away some of the unknown for you.

    As a parent it is terrifying leading up to surgery on your child but I can honestly say that it really was not as bad as I had imagined. Although I should make clear the growth rod surgery Maddy had is different to spinal fusion as there are less fixings on the spine to allow for growth.

    I would like to reassure you that when we were in hospital in December, there was a teenage girl who had had spinal fusion by Mr Tucker (my hero!). In the first few hours after surgery she was completely awake and talking with her family - the morphine pump having taken away her pain. During the first 24 hours there was a nurse stationed at the end of her bed doing frequent observations. We were discharged the following day but went to the GOSH Christmas party the next week and went up to Sky Ward to give a gift to the nurses. We looked to see how this girl was and she had already gone home...this was 5 days post op! We couldn't believe it! So although it is a major operation and your daughter will have certain restrictions for a while, it really is not as bad as you are probably imagining.

    Keep us informed of your daughter's progress and don't hesitate to send me a personal message if I can help in anyway.

    Much love Rachie x
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  7. #37
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    Default Re: Insertion of growth rod

    Thank you so much for reading my post. We have felt alone and so lost with all this, but having read your and the other posts. We can the light at the end of the tunnel. Cant stop being scared, still awake most nights with the thought of the operation. more than anything i fear, not being able to take away her pain. Im still so confused and most of how i feel and what i say makes little sense.

    Thank you for sharing.

  8. #38
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    Default Re: Insertion of growth rod

    HI Racie...

    its so great to read this, and it did all go so well. so how is Maddie doing now...... My Karen (12) was confirmed for surgery on Wednesday. 26th Aug and her date for surgery is Friday 13th Nov so we are all pretty anxious.

    Hope Maddie is feeling much better......

    love to you all

    sandra xx

  9. #39
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    Default Re: Insertion of growth rod

    I thank you oh so much, I have a 9yr old who has congenital scoliosis and is having surgery on 1/4/10. I'm so scared even though I have prayed about it. This helps me so much so I know what to expect.
    Her curve is at 75% so it's worse than what your daughter had, I just pray everything goes smoothly. I am happy that Maddy is better now! I wish you all more happy days!!!
    islandmom

  10. #40
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    Default Re: Insertion of growth rod

    You are welcome! The waiting is the worst bit and, although it probably doesn't seem possible to you at the moment, life will return to some kind of normality. It did for us, remarkably quickly.

    Keep in touch with the site and let us know how you get on.

    Rachie x

    PS I have sent you a personal message.
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  11. #41
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    Default Re: Insertion of growth rod

    Hi, thank you again, and I will keep you all posted about my daughters surgery. Thank you!
    I also sent you a personal note!

  12. #42
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    Default Re: Insertion of growth rod

    Hi, my daughter Aisling has a progressive form of scoliosis, and we have been having second opinions on her prognosis late last year. Until now we have managed to avoid having surgery, but we are now going down the road of having growth rods inserted, The date for the operation has not yet been confirmed as yet but we are attending Our Lady's Hospital for sick children in Crumlin, Dublin where we are under Mr Pat Kiely, where Aisling is still be serial casted for this. Thank you for posting your stay in hospital this has given me an insight into the journey ahead, one which has me feeling rather sick in my stomach, I would swap places now with her if it was possible. Thank you again, Jacqui

  13. #43
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    Default Re: Insertion of growth rod

    Hi,

    It is a bit of a rollercoaster, but the waiting before surgery was worse than anything. Please let us know when you have a date and keep us posted on how she does.

    Rachie x
    Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  14. #44
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    Default Re: Insertion of growth rod

    i am 8 and i am having a growth rod installed on june 21.i am scared and unsure of what i will be able to do afterwards. i am a dancer and a cheerleader so i hope to return to it one day.they say i might have to be home schooled for awhile which is ok.my family is the scaredist i think.how is her every 6 month surgery going?Is she up to full speed as before?

  15. #45
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    Default Re: Insertion of growth rod

    Hello there. My daughter is nearly 8 and has had growth rods for 2 years. She still dances every week. You may find that you're not as flexible as before and that you can't do moves that you could before, but you should be able to resume dancing a couple of months after surgery. I'm not sure about cheerleading as I don't know what's involved. After every lengthening, Erin can resume dancing as soon as she feels able (sometimes less than a week) and swimming once the wound has healed. After the insertion operation, she had a month off of school and then returned part-time for a week or two. Our local authority sent a home schooler who was based at our local hospital. Perhaps your mum could look into whether that's available where you are.

    Surgery is really scary for us mums and dads. Perhaps if they have questions they can join us parents here and we can help them with any questions they may have or help put them at ease.

    Good luck with your surgery
    Andrea xx
    Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.

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