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Thread: Not the news we were hoping for or expecting

  1. #16
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    I think you have a good attitude and approach towards this.

    Slouching does not cause scoliosis which is a genetic condition. Kids can appear to slouch AS A RESULT of scoliosis, NOT as a cause.

    This is why grandparents who don't have a chance in heck of sorting out cause and effect should not be compounding the already off-the-scale anguish of parents no matter how well intentioned.

    Both my twins had scoliosis and both required fusion. I feel like my life has been shortened due to the anguish of the situation. I did not have any family members giving me pieces of their unlettered "geniusry" at any point. It would have made things orders of magnitude worse and for no reason.

    I feel so bad for your wife and you.
    Last edited by Pooka1; 04-19-2011 at 06:50 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    My husband wants to throw grenades at a certain building so I hope you don't copy him, j/k

    Family only shout out what they feel and that's not a bad thing b/c then we know at least they care. If anything scoliosis in a teen brings families together. Eventually everyone gets on the same page, it just takes a little while. Your boy isn't dying, he just has a curvy spine.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  3. #18
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    I might suggest there are PLENTY of ways for family members to show concern that do NOT entail practicing medicine with out a license or a single clue about the (lack of) efficacy of ways that prevent surgery.

    It's like it's logical to some folks that everything, sight unseen, could have been prevented to the point of making a parent feel even more crushed than they already are. If you're going to crush someone you better damn well have the facts on your side. In this case, the facts are NOT on that side which compounds the bad behavior immensely.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    I just reread my last post and realized that probably came across as unsympathetic to the OP, that's what happens when you make a hit and post comment late at night. Hope I didn't offend you by saying your son isn't dying he just has a curvy spine, eek.

    Anyway, I thought I personally had dealt with all the 'guilt' issues but today I have been beating myself up again which is weird b/c I know it's not my fault my son has scoliosis but looking back I wish I had taken it more seriously when he was first diagnosed but I had no idea it would progress so quickly and even Dr. K (surgeon) seemed somewhat surprised that 'all this happened so quickly'. My son's case does seem unusual compared to most and then the double whammy was having to wait SO long to be dealt with. Makes me sad and mad too.

    I've been pretty lucky with my family not pointing fingers at me and my husband and they are all very supportive. The thing they were harassing me about was getting an appointment and it was frustrating telling them all the time that I'm trying, really I am I'm just not getting anywhere. Fortunately for most people this is not an issue and is just my personal dilemma. According to my sister, BC has the best cancer treatment in Canada and that has helped her but doesn't apply to my situation with my son.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  5. #20
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    Elisa, you did not come across unsympathetic. Just trying to get everything figured out and get a handle on what is going on. It has been a rough week. In addition to this, I had the wonderful experience of passing a kidney stone on Tuesday and Wednesday. Oh Joy.

    Talked to his Dr.'s office today, they said that Shriner's was very good, but they were concerned that Shriner's only does X number of surgeries a year, based on how much money they have to pay for the surgeries. And, according to them, my son may end up waiting longer there than with his Dr. to get the surgery. They said if we really wanted him to recuperate back home, two states from where we currently live, that he would be fine to make the trip after they release him from the hospital. He is on their list for surgeries, which would put him about mid August for his surgery, but we have also filled out the app for Shriner's and sent it in. Monday is an MRI to see if they can find a cause for the scoliosis, according to the nurse that may move things up timeline depending on the results.

    In the meantime I have been reading this forum trying to get info. I have not talked to my mother, I am still too mad at her. Maybe this weekend. So that is about it for now.

  6. #21
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    Lokanasdad, it's great that you're on the ball with getting things sorted out for your son. You've already filled and mailed the Shriners' application; I should have been more like you!

    Not sure how Shriners works as far as how many surgeries they can do and how long the wait list is. I'd think a lot of it would depend on how urgent the situation is. With your son already at 50* and if his progression was rather fast (have to go back and read your original post for time frame) then he could be seen sooner than you think. It's the teenage boy thing too that has to be considered b/c for some reason if they are going to progress then it seems to happen much more quickly than in teenage girls. I have no idea why, not sure anyone really does.

    I'm sure you and your mom will work things out eventually. Families can be such a pain in the butt at times b/c they feel they have the right to say whatever they like b/c they're family, especially moms it seems. My mom is the worst at blurting out nasty things to me and everyone else it seems but over the years I've just tuned her out and then she almost always calls me back and apologizes for "her behaviour". It's an ongoing scenario and one of the reasons I moved three hours up island to give myself some space from her. She's a difficult one.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  7. #22
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    Mar 2011
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    Dad gum it! MRI was cancelled at 3 PM today because their machine broke. They called and wife had to reschedule for NEXT friday. So now we wait two more weeks to get an idea of what is really going on.

    yay.

  8. #23
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    That's so frustrating! When we were down in Portland in January my son had an MRI and I got to sit right next to the tech the whole time and view the images on his computers and he showed me all kinds of things and I got to ask a tonne of questions. It was really neat. I asked him if these machines break down very much and he said "ALL the time" and they're a bit tricky to fix b/c you can't use any metal tools whatsoever; I guess that magnet always stays on.

    I should also mention that the MRI of my son's whole spine took almost three hours; way longer than I assumed so be prepared for that, although it probably took a bit longer for my son's session b/c his spine is quite twisty and he had to take really little pictures to get an accurate reading.

    I was advised by one of the doctor's he'd seen the day before to give my son something to relax him such as Benadryl but I asked her if it would be okay to give him 1mg of Lorazapam (Ativan) and she said that would be fine. I gave him one as soon as he got changed into the hospital pajama bottoms which was about fifteen minutes before his exam. It made him nice and relaxed which is really important for MRI's b/c if you move they have to 'start from another scout' and that makes the process even longer. It is also very noisy inside the MRI... like a construction zone according to my son but they do give you earplugs. He had a headache when he got out and was really cranky and just wanted to get out of the hospital and back to our hotel room and then he was fine.

    Some people get the results right away but I had to wait about a week and it was difficult wondering if anything else was going on or if it was 'just' the scoliosis and apparently the MRI came back normal, nothing our of the ordinary going on with his spinal cord etc. I was very relieved.

    On a side note, I thought that being an MRI tech was very very interesting and talked to my son lately about the possibility of him perhaps looking into something like that as a career b/c he loves computers and it's not a physical job at all which is right up his alley b/c he's not that type of kid. Also the tech had a really comfy chair to sit in with a very nice little stereo system in his workspace and can you believe there was a Queen (I love Freddy!) marathon playing that night. What are the chances of that!? My son does seem quite interested in possibly pursuing the MRI tech possibility. We'll look into it down the road as he's just finishing up middle school (grade 9) this year.
    Last edited by Elisa; 03-15-2011 at 11:52 AM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  9. #24
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    Quote Originally Posted by LokanasDad View Post
    Dad gum it! MRI was cancelled at 3 PM today because their machine broke. They called and wife had to reschedule for NEXT friday. So now we wait two more weeks to get an idea of what is really going on.

    yay.
    Whenever I hear about MRI machines breaking or 'going down'. This is usually what I think happens.

    http://mrimetaldetector.com/blog/wp-...atient-bed.jpg

  10. #25
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    British Columbia
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    ^^ That's hilarious! I think I see my watch, earrings and hairpins in there too, lol.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  11. #26
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    Quote Originally Posted by skevimc View Post
    Whenever I hear about MRI machines breaking or 'going down'. This is usually what I think happens.

    http://mrimetaldetector.com/blog/wp-...atient-bed.jpg
    Excellent. Hard to imagine how that even happens.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #27
    Join Date
    Sep 2009
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    146
    It's hard not too, but please don't blame yourselves for something like this.

    My youngest was under the care of a Ortho Doc. for more then a year who kept telling us she was not going to progress. Well - when he looked at me and said I need to refer you too a specialist for surgery I said you told me you were the specialist :0. BTW this was before I found this site, but was the reason I did (very thankful).

    See you can do all your supposed too and still end up at surgery. Your son is just at the surgery % now, at least when we went through this 50* was where they talked about surgery. I'm thankful that she didn't wear a brace for years and then need surgery. Don't know if that would have prevented surgery, but that is the past and can't dwell there so thankful for that too.

    Dee
    Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
    Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
    Jes (20yo) T 3 -> L 3 w/ Kyphosis

  13. #28
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    Some indications of the lack of necessity and (in)efficacy of bracing...

    It had been estimated sevral years ago that:
    ~70% of kids are braced needlessly
    ~20% are bracing failures (though there is a real question about compliance)
    ~10% might have had their curves held below surgical threshold by brace.

    Recently, Scoliscore estimates in their calibration population:
    ~75% will be <40* at maturity
    ~1% will likely reach surgical range in adolescence
    (ETA: The other 24% are hard to predict... some will need surgery and some won't)

    We also know that brace or no, if you are >30* at maturity there is a real chance of reaching surgery territory, either through progression or ancillary damage.

    If these estimates are close to correct, your son dodged the bracing bullet.
    Last edited by Pooka1; 03-18-2011 at 09:29 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
    Join Date
    Mar 2011
    Posts
    52
    What a week. Bug is starting to come to terms with his needing surgery. He asked me the other evening the question that I have been dreading; "what if something goes wrong?" He has also decided that he wants to get his learners permit after all. He said that way if he gets there and decides he does not want to do the surgery, he will know how to drive away. Still nothing from Shriners, his MRI here in town is this coming Friday.

  15. #30
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    Quote Originally Posted by LokanasDad View Post
    He has also decided that he wants to get his learners permit after all. He said that way if he gets there and decides he does not want to do the surgery, he will know how to drive away.
    That's pretty funny - I'm glad to see he's holding onto his sense of humor through all of this.

    On the fears - kids just come through these surgeries remarkably well. There's totally reasonable fear leading up to it, but it's in the rearview mirror and they're on with their lives really soon afterwards.

    I'm glad to hear your doc is doing an MRI. It took us until our second doc for someone to tell us that boys should always have MRIs to see if there's anything other then straight idiopathic scoliosis going on.

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