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Thread: Feel it's only polite to say hello before I ask for help.

  1. #1
    Join Date
    Jul 2014
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    Default Feel it's only polite to say hello before I ask for help.

    Hello! I have a daughter of 12 who has grade 3 spondylolisthesis also kyphosis and scoliosis.
    We are due to see Neil Davidson at Alder hey in 2 weeks and I'd be really grateful if anyone has had him as their surgeon and can tell me lovely things.
    My lovely little girl is pinning all her hopes on him transforming her from (as someone kindly called her) a waddling freak into a painfree straight person.
    I am just plain terrified of everything and would appreciate some hand holding.

  2. #2
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    Default Re: Feel it's only polite to say hello before I ask for help.

    I can't offer you any information on this surgeon etc but I do truly feel for you. I would like to welcome you and say Hi back. Good luck I hope it all works out well x

  3. #3
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    Default Re: Feel it's only polite to say hello before I ask for help.

    What a shocking thing for someone to say to your poor daughter

    You've come to the right place for support. Although I have no knowledge of your daughter's surgeon, Alder Hey has an extremely good name so I'm sure she'll be in safe hands there. Have a hug (or three!)
    Me, a Mod? Nah ... I'll always be a rocker

  4. #4
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    Dec 2012
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    Reno, Nevada USA
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    Default Re: Feel it's only polite to say hello before I ask for help.

    That was extremely ignorant and far from being a kind comment.... Itís a good thing I didnít hear that because my response would be stern.

    I was never a parent of a scoli so I donít know how it feels as a parent. One thing I do know is that children have this built in determination to survive, its quite amazing at how brave they truly are....They also have an ability to heal and adapt so quickly.

    It is terrifying not knowing what will happen...Its probably our main fear. I think that with todays technology and high level of scoliosis surgical training that we can relax some....These high level scoliosis centers contain the best equipment and the most knowledgeable people. As long as you are comfortable with your surgeon, and you will know as long as he or she is compassionate enough to answer any questions you might have, put your trust and faith in them as they do this every single day...they are professionals.

    Do you have any idea what they propose to do?

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  5. #5
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    Default Re: Feel it's only polite to say hello before I ask for help.

    Thanks all for your kind words.
    Rod, my daughter will be having a fusion to try and fix the spondylolisthesis, as she can now not walk for any more than about 2 minutes.
    The scoli they are dealing with later as they think there is a chance it is as a result of the spine trying to compensate for the spondy.
    We shall know more once we have seen the surgeon I suppose.

  6. #6
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    Dec 2012
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    Reno, Nevada USA
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    Default Re: Feel it's only polite to say hello before I ask for help.

    Is this at L5-S1?

    Do you know her Cobb angles?

    Where are you located? Is this a Shriner's hospital?

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  7. #7
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    Jul 2014
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    Default Re: Feel it's only polite to say hello before I ask for help.

    I'm in the UK Rod.
    Have no idea about angles, the scoliosis is very much down the list of priorities at the moment, if the last consult was anything to go by.
    It's been 7 months since we have seen anyone though, so new surgeon next week and more MRI results should tell us more.

  8. #8
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    Default Re: Feel it's only polite to say hello before I ask for help.

    Sorry, I should be calling you Ed, but have Rod stuck in my head!

  9. #9
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    South London
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    Default Re: Feel it's only polite to say hello before I ask for help.

    This is not nice to hear. but its great to hear they have a good idea on what they want to do and when. As it all seems like the spondylolisthesis op will give her a new life
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  10. #10
    Join Date
    Jul 2014
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    10

    Default Re: Feel it's only polite to say hello before I ask for help.

    I really emphasise, mine was Alder Hey, too. That was 10 years ago now, when I was 16. I'm afaid I don't know much about Neil Davidson, but my current surgeon has mentioned him positively.

    Argh, bullies... Yeah, I was bullied, too. Ended up with a lot of confidence, and body image issues because of it. It can be really rough for girls especially. It was for me even though I'm really not naturally a girly, fashion/image concious woman at all, because while I wouldn't have worried about what I looked like if just left to my self, other people made it very clear that they did care, and felt entitled to comment on my appearance. It's probably a good sign your daughter felt able to share that with you, I didn't really feel that able to talk to my mum about the kind of comments people made, because while she didn't necessarily mean badly, some of her own comments contributed to it. It's probably difficult for a parent to balance. Her commenting when certain items of clothing showed the curve of my spine may have been meant to be helpful, but just made me feel like it was unacceptable to show my body, and like I had to hide my curve as though it was somehow shameful/would bother others, whereas if she'd just left me alone, I'd probably have happily just worn what I wanted, instead of learning to see my curve as bad. Being a curvy-spine person can be Ok, too (and it's sure as hell better than being a judgemental straight-spine person like the one who made that insensitive comment to her), it's kind of important to remember since the correction, while hopefully good, won't necessarily be 100%.

    She should certainly be able to walk with much much greater ease, though if she has a limp, that might still remain somewhat (with mine, it just depends how tired I am, how noticeable it is).

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