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Thread: Panic!

  1. #1
    Join Date
    Apr 2004
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    Morpeth, Northumberland
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    194

    Panic!

    I've just been told that my 16 year old daughter will require surgery to fuse her spine and I'm currently scared stiff. Our doctor moved from "I think we should do something about this" to a list of possible problems - starting with death and moving down through paralysis to infection and the possibility of further surgery - before I could even catch my breath.
    We've been sent away to think about it for a couple of months and come back with a list of questions. I could really use some advice from someone who's been through this.
    My daughter has cerebral palsy (spastic quadraplegia) and is very dependent. We have had some fairly major surgery for various things in the past but nothing as big as this.

  2. #2
    Join Date
    Apr 2004
    Location
    Brush, Colorado
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    89
    I was one of those patients that surgery was the only option. I had kyphoscoliosis and it was progressing at a huge rate. My list of future problems was the same. I was 13 and my whole family was terrified. For me the surgery was a godsend! The majority of my spine is fused except for the lower 6 inches. I am permanently ram rod straight! I have had none of those dire predictions come true. In fact, I am 28 and happily married. I guess the question is whether or not you daughter's future will benefit from this. Do you think fusion will give her a better adulthood? For me the answer was a solid yes. My advice is to try and ignore the predictions for the moment. How will this surgery enhance her life? Will it make current health problems easier for her? Are there current problems caused by the curvature? An example would be my dad. He had spinal fusion because his kyphosis curve was pushing his heart and lungs into his ribcage. They couldn't perform normally. The surgery eased this and he has had no more problems. I sincerely hope that this gives you a way to think about the decision without the panic taking over. You know what is going on right now, so consider that 1st. Then you can add in the future possbilities.

  3. #3
    Join Date
    Apr 2004
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    Morpeth, Northumberland
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    Thanks! Three deep breaths and a large gin later I am thinking a bit more like a rational human being.
    It was just the shock threw me for a bit: I went into the consulting room with a healthy, if severely disabled youngster and came out with one who needs a major operation, is probably too thin (I thought she was doing OK) and may in any case have a restricted life span - something no-one else had suggested to us - and it was just too much all at once.

  4. #4
    Mary Lou Guest
    Lorrie...
    I'm glad to see you've calmed down a little. I understand why you are so concerned and you should be! We Moms all have our moments of "freaking out" when it comes to our children's Scoliosis. I'm sure you have never taken surgery on your daughter lightly and now isn't the time to start. Have you thought of a second opinion? Usually, unless the Scoliosis is causing problems with the heart or lungs, surgery isn't an emergency situation. You have time and make sure you take all the time you need to research the surgery, the doctor, etc. There are several good books out there telling about the surgery, which you can find at the book store on this forum. Also, there are many people on this forum who will gladly tell you their stories of surgery. Hang in there and know you aren't alone in this.
    Mary Lou

  5. #5
    Join Date
    Apr 2004
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    Morpeth, Northumberland
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    Thanks Mary Lou. We're going back to see our consultant in about six weeks with our list of questions - which I think will be rather more pertinant thanks to reading the info on this site - so I'm hoping to have a much better idea of exactly what's likely to happen then.
    Once that's happened we'll have plenty of time to think as, being the UK, we'll go on the year-long waiting list. You're quite right, it's not an emergency situation. The idea seems to be to stop it from getting to that stage and therfore improve my daughter's quality of life in the future.

  6. #6
    Join Date
    Jun 2004
    Location
    houston texas
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    1

    hey im new and i need support

    hi my name is jasmine and i am 15 years old. i have been detected with scoliosis but my doctors says i dont need a brace because my body is still growing but im scared because im young an active and i feel my life getting tired i think im going to be all deform. im embarresed to tell my boyfriend but people notice sometimes rib sticking out.My boyfrined says im perfect but he doesnt know the truth about my spine. i mean you cant really tell unless you stare hard, but i feel bad withing my self because sometimes i can't even help my mom mop or something because i get tired of bending over. i feel a hard pinch like a knot then i have to bend over in a chair to strecth my back but please help me feel better. Im so uncapable of making myself feel better because im skinny and wear tight shirts and my right side be always sticking out. Im worried i feel awkard. if u would kindly reply me at my email i would appriciate that. it is Jjasmine832@aol.com

    Thank you
    Jasmine Contreras

  7. #7
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
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    Hi Jasmine
    I'm sorry you are feeling so bad about yourself at the moment. Just a couple of things to think about:
    Nobody, but nobody, has a perfect body - everybody worries about something. What really matters is the person living in your body, the real you, and I'm sure that's who your boyfriend thinks is perfect.
    I think you should tell him about your scoliosis and how you are feeling. It's almost certain that he'll reassure you and make you feel a whole lot better about yourself. If he doesn't then he might not be good enough for you anyway - you might want to show him the door.
    I'm sure that whether you can help around the house is the last thing your Mom is worrying about - I bet she's just worrying about you and how to help you get through this and get better.
    You might want to talk to your doctor about how worried you are about what's going to happen to your body long term. He or she may well be able to dispell a lot of your fears. Whatever the doctor tells you it will be less frightening to worry about what's real rather than the much worse things your imagination can come up with left to its own devices - that's what I've always found anyway.
    Idon't know if any of this helps but just remeber that we're thinking about you.

    Lorrie

  8. #8
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
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    Well, we've been back to see our consultant and my daughter is now on the (long) waiting list for surgery.
    Much better consultation this time - we saw the consultant throughout rather than spending time with the registrar who scared the like out of us last time. I took my list of questions and he went through them with us (my husband managed to get time off work to come this time which helped a lot) one at a time.
    The x-rays were convincing - my daughter seems to be trying to do an excellent imitation of a corkscrew and she will need to be fused from about T3 right down to her pelvis. Whether she needs one operation or two will depend on how flexible her curve is when we get to the head of the list.
    For the moment we have to spend some time trying to get her to understand what is going to happen to her and why. That's going to be a toughie as her understanding is limited and I don't want to just scare her. I think I'm going to have to either get hold of a model or build one out of cotton reels in true Blue Peter style!
    Surgery will probably be a bit under a year away so we've got a bit of time although if her scoliosis progresses fast we would be bumped up the list as being urgent. We go back in October for more x-rays. Think she'll glow in the dark soon!

  9. #9
    Join Date
    May 2004
    Posts
    66
    Lorrie,
    have u heard of ASCO scoliosis treatment?

  10. #10
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
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    194
    Hi there,

    I've visited the ASCO website and there would be quite a number of problems in trying to use it.
    It aims to treat idiopathic scoliosis only and that is not what my daughter has - her problem stems from the brain damage she suffered at birth and, I think, would qualify as being part of a 'disease process' which the site says is a contraindication to treatment.
    In addition, she would not be capable of the exercises which form part of the treatment as she has very little voluntary muscle control of her back - in fact, I wouldn't swear she has any.
    Last, but not least, as far as I can see it's not available in the UK.

    Thanks anyway but I think it's going to have to be surgery for us.

    Lorrie

  11. #11
    Mary Lou Guest
    Jasmine...

    I don't want to scare you, but most doctors say the most important time to wear a brace is while your body is still growing. The purpose of wearing a brace is to try to hold/stop the progression of your curve. If you can, please get a second opinion.

    Mary Lou

  12. #12
    Join Date
    May 2004
    Posts
    11
    Jasmine,

    You are still growing and your doc says you cannot wear a brace BECAUSE you are growing? Sorry, but your doc is talking complete nonsense! A doctor, also when he has studied for years, can be wrong. Doctors do not know everything and they can be wrong like everyone of us! Therefore I do not think that it is a good strategy to trust your doctor too much. It is your body, your pain and your future and therefore your should do some research. At least, please, please get a second opinon!

    best regards,
    Lilith

  13. #13
    Join Date
    Sep 2004
    Location
    Florida
    Posts
    11
    Hi Lorrie,
    My name is Tiffany. I have been through 3 surgeries for my scoliosis. It is definitely not fun...but ya gotta do whatcha gotta do..... God Bless
    Tiffany

  14. #14
    Join Date
    Dec 2004
    Posts
    2

    Arrow

    err this post is for jasmin
    [sorry first time on this thing - hope it works right]
    anyways. im 17 and i've had scoliosis since i was born (im a premie) it is ABSOLUTELY POSITIVELY IMPERRATIVE that u talk to another doctor (no offense) but, the MOST IMPORTANT TIME to be wearing a brace is when u'r growning, so that the brace can "adjust" as u grow (does that make sense?) i've had to wear a brace since i was 6 until i was 16! that's 10 years! and my spine is still not completely straight. i'll admit i hated wearing it and never wanted to. my school has uniforms and i would DIE before wearing it too school. it was just so hard y'know?
    well anyways my point is....plz get a second opinion bcuz once u stop growing, that's it. ur' spine can't 'adjust' (like it could while u are growing) ...yea
    -frances

  15. #15
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
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    194
    Having a bad day today. We haven't got a date yet but we did get a letter from the hospital today saying that we'll be admitted in the next 6 - 10 weeks and it just made eveything a bit immanent. We've also been told we'll be called in for pre-op tests about a fortnight or so before. Can anyone tell me what these involve? - when Geeve has had surgery previously we've just been admitted the day before.

    We have started preparing her for the op - I managed to borrow a life-size plastic spine from a local hospital and that was useful. The trouble is that, to help her understand anything, you need to do lots and lots of repetition and she's started to get upset when we mention it. She's used to wearing splints to keep bits of her straight (arms, hands, legs not to mention the brace) so we've tried to explain that it's a bit like having a splint put inside so her back will be straight all the time. I'm so worried that I'll pass my feelings about it onto her so I'm trying to be very calm (that special calm voice you keep for when you're in a panic, my other daughter says!) Her school is helping - we've asked them to just treat it in a matter of fact way and talk about it just in ordinary conversation. Any suggestions of how to get her to understand without scaring her witless would be very welcome.

    Lorrie

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