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Thread: So glad I found you guys!

  1. #1
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    So glad I found you guys!

    Hello all. I just found this forum a few days ago and have been reading a lot of the posts and finding them so informative and have so many questions that I don't even know where to begin.

    I live on Vancouver Island off the coast of British Columbia and I have a fourteen-year-old son who has been diagnosed with scoliosis. About a year ago, my husband noticed a strange bump on the right side of his back and we were sure it was from his poor posture while at his computer and we didn't look into it for several months after that until his bump became more noticeable.

    Took him for a doc appointment, got x-rays done and it was confirmed he definitely has scoliosis. There are no pediatric orthopedic surgeons on Vancouver Island so he is waiting to see Dr. Riley over on the mainland at BC's Children's Hospital. The wait is LONG and my husband calls often and talks to the secretary there and the other day she told my husband that they are going to fit him in between patients otherwise he won't get in until 2012!

    I don't know what degree his curve(s) are but I am going to find out asap from the doc here. I know he told me what they were but honestly it didn't mean much to me at the time but I do remember the doc saying that it was not mild, more moderate.

    Now that I've looked at other pics of people on the Net, I feel as though my son's scoliosis is bordering on severe b/c his spine not only looks crooked but looks like it's twisting and making the whole right side stick out and his left side looks caved in. I also noticed the other day that he has stretch marks over his lower ribs on the right side, like the skin is way too tight there.

    He does have some back discomfort and is constantly applying a muscle rub. We have just recently bought him a much better bed as well as a better more supportive computer chair as he is not an athletic kid at all and is more a computer nerd type.

    I'm taking him to a chiropractor on Monday who also has scoliosis so hopefully he'll be able to give me more info as well as some exercises etc. that my son can do at home while he waits to see Dr. Riley in Vancouver.

    Questions:

    Anyone familiar with BC Children's Hospital and Dr. Riley?

    Do you think he's too old for a brace? Since he's a boy, he's got a lot more growing years ahead.

    What can I do to help my son in the meantime while we're waiting for him to be seen?

    Thanks so much for reading and thanks in advance for any responses.

  2. #2
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    This really freaked me out when I first read it and I sent the link to my husband who promptly freaked out soon thereafter. Now after spending a few days reading posts here and elsewhere, I'm beginning to think this site is very one sided and perhaps is designed to scare people away from surgery and direct them to chiropractors instead??

    http://www.scoliosiscorrectioncenter...toldtruth.html

  3. #3
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    Wow that site is a masterpiece of self loathing... I scanned several pages and couldn't find a single place where Hersh admits he is only a chiro. This is an area where places like the UK (and Canada?) are way ahead of the US... chiros are not allowed to use the "Dr." title.

    Chiros are not trained to treat scoliosis FULL STOP.

    Chiros shouldn't be treating kids AT ALL FULL STOP.

    http://www.scoliosis.org/forum/showthread.php?t=11146

    Elisa, welcome. I am sorry to hear about your son's diagnosis.

    Time is a double-edged sword in the case of a 14 y.o. boy. The curve might be progressing but the child is growing.

    I suggest you immediately apply to a Shriners hospital in the US near you. As I understand it, they take foreign patients. If you are accepted, you will likely be seen much earlier.

    As for your questions...

    Anyone familiar with BC Children's Hospital and Dr. Riley?
    Not me.

    Do you think he's too old for a brace? Since he's a boy, he's got a lot more growing years ahead.
    That's for an experienced board certified pediatric orthopedic surgeon to answer.

    What can I do to help my son in the meantime while we're waiting for him to be seen?
    I'd apply to Shriner's ASAP if I were you.

    Good luck.
    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. #4
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    By the way, it should go without saying that people like chiros who don't have a lick of training in surgery should not be commenting on surgery.
    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."

  5. #5
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    Thanks for your reply Pooka. Now that you mention it, there is no "Dr." title in front of chiropractors' names up here. I'll read that link you posted.

    I am going to look into the Shriners for sure. Thing is, when my husband talked to Dr. Riley's secretary a while back and mentioned the Shriners she was very quick to tell him that IF we went the Shriners' route they (BC Childrens) would have nothing to do with his followup. What do you guys think about that? I think the closest Shriners' hospital to us is in Oregon which of course is two states below us and out of Country. So confusing and so many decisions to make.
    Last edited by Elisa; 11-11-2010 at 09:55 PM.

  6. #6
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    This is another example of taking all the small, negative outcome studies, and ignoring all of the big, positive outcome studies. This is intentional deception. How do these people live with themselves?
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  7. #7
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    Quote Originally Posted by LindaRacine View Post
    This is another example of taking all the small, negative outcome studies, and ignoring all of the big, positive outcome studies. This is intentional deception. How do these people live with themselves?
    Chiros are not trained in research or even anything resembling rigorous science and therefore don't understand that how they speak about studies is naive, ignorant, and misleading to themselves and others.

    Chiros know they have a credibility problem which accounts for the fact that the word "chiropractor" or "chiropractic" doesn't appear on that web site although Hersh is a chiro. But he uses the title "Dr." This is a very good argument to disallow chiros from using the doctor title. They have the lowest average GPA of any of the allied medical professions and it shows. I would never bring a child to a chiro though I was helped as adult by one... he did some adjustments but admitted that PT and time would solve the problem. Honest.

    Still there are top shelf thinkers and evidence-based chiros like Mark Morningstar. Morningstar clearly understands how to do research and how to write it up. He should have gone to medical school in my opinion. That is NOT the case with the Clear types and you can see this on some recent threads Fix's site. Morningstar is eating their lunch scientifically, logically, intellectually, etc. etc. etc.
    Last edited by Pooka1; 11-12-2010 at 05:43 AM.
    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."

  8. #8
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    I think Gayle (leahdragonfly) has experience with the Oregon Shriners Hospital. You might try PM'ing her to ask her about it.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  9. #9
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    Thanks for the input guys.

    I have done so much reading these past few days and although it's overwhelming it is also good to know I'm not as alone as I thought I was and am now feeling somewhat better about dealing/managing my son's scoliosis.

    Overall, he is doing great, feels great, other than a bit of backache which he isn't complaining about but I know he feels it b/c he likes to put that muscle rub on after a full day of school and walking to and from as well.

    I'm going to keep that chiro appointment on Monday after school, mostly b/c I'd like to learn about some exercises that he could do at home, if for nothing else than to improve his muscle tone. As mentioned, he is not in any way shape or form an athletic kid and probably spends too much time playing computer games, reading and watching TV.

    In a weird sort of way, him having scoliosis is/would be easier than if my other boy or my daughter had it b/c my oldest son is much more active and sporty and my daughter would be so concerned about her body image. She is the one that gets most upset about his crooked back and his hump that has developed. Scolio boy hardly seems phased at all and he is a genuinely happy and content kid.

    Today him and I are going shopping for some new jeans and a few new sweaters etc. In a strange sort of way, this diagnosis has brought not only my son and I closer but has brought our family closer. That said, I need to be very careful that I don't "dote" as my husband has pointed out, and let him do things by himself, or splurge on him b/c 'I' feel sorry for him and his diagnosis. Does this make sense?

  10. #10
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    The jeans shopping didn't go all that well. First off, he's bigger than I thought he was so he's now in the men's section but for some reason all of the jeans looked so short on him. I'll take him to some different shops this week and hopefully the salesperson will help me find some jeans that look better on him. I did buy a hoodie he liked though. He was looking at a bunch of slinky sweaters and I'm glad he decided against them b/c all I could think of was that anything slinky would accentuate his back hump and high right shoulder but didn't have the heart to tell him that.

    I'm kinda looking forward to this chiro appointment tomorrow b/c other than our family doc, no one has actually looked at his back. I just want a bit more feedback from others I guess. I don't know what his curve(s) is but as mentioned, 38* sticks in my head but my husband said he recalls been told 47* so I'm curious to see what the chiro says as well as I'm going to call the doc's office tomorrow and make an appointment so I can get the actual results of the x-rays. He's had two sets done about five months apart. I'm going to write down all the numbers from both sets and will post them here.

    I would really like to take pics of his back and post them here as well but I don't want to make him feel self-conscious so I'll hold off on that for now.

  11. #11
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    Hi Elisa

    My dd isn't the athletic type, she's also a computer "nerd" and has decided on a career in history. I was glad that at least the surgery hasn't had a huge impact on her in terms of what she likes to do. Not to say it hasn't affected her but it could have been worse.

    I totally agree that our experience with her scoliosis brought us all closer together, that's one thing that I feel was a positive outcome. I wouldn't worry too much about doting or spoiling your son, if you don't do it now, I don't think this will change anything. My dd is now in college, driving and pretty much leading a normal life.

    I dealt with 3 chiropractors prior to surgery. At the time, the first one we saw was the only provider of Spinecor in Houston so we went to him for the brace. It wasn't successful and his "program" that he promoted in conjunction with the brace (therapy and nutrition supplements) was very costly. I don't doubt that some kids had good results with the Spinecor, but Sheena's curves were already too high for it to work.

    The 2nd chiro, I sought out specifically because he had some special equipment that he used for his regular back patients and I wanted to try. He did not deal with scoliosis patients and was very honest and frank with me that he didn't know if the therapy I had in mind would work. We put a time limit on the therapy and after several months with no improvement, we both agreed it was time to quit. He's one of the good guys in my opinion and didn't do anything to take advantage of us.

    The 3rd chiro was Dr. Woggon of Clear. To be honest, I was very desperate to find something to avoid surgery, especially with the length of fusion my daughter needed, I had to resolve in my own mind that there was nothing left to do. It wasn't successful and was also very costly.

    I guess what i'm trying to tell you is to be careful about chiros. I think they have their place with back pain management but not with scoliosis. I also found that they're very friendly and draw you in. We had a very bad experience with the first surgeon we met so the chiro was like a breath of fresh air in comparison.

    I was wondering if you can get an appt. any sooner at another hospital. I realize Canada has a completely different healthcare system, but we went to 4 surgeons (not including the 1st one) before making a decision. Do you have that option?

  12. #12
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    Hi Elisa,

    I would most certainly go to Shriners in Portland if at all possible, for the sake of a second opinion if nothing else. Your canadian insurance does not need to know, and I am appalled that a secretary would threaten you that they wouldn't see your son if you went to shriners. I would demand to see that policy in writing before worrying about it.

    We ultimately discontinued care in Portland because we felt strongly that we wanted Leah to have vertebral stapling (VBS), which they do not offer in Portland. But If your son needs a brace and you were to decide to try that route, they do have a great orthotics guy, Don Hayhurst, who is a fantastic brace maker. And, amazingly, all care at Shriners is free of charge, and you do not need a sponsor.

    If I was in your shoes I would not be very happy waiting some long, indeterminate length of time to be seen by the orthopedist. Especially if the curve is 38 degrees and you want to pursue bracing. If the curve is well into the 40's, you would still get a thorough evaluation in Portland.

    You can PM me if you'd like to hear more about our experiences in Portland.

    Gayle
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  13. #13
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    Dear Elisa, I have read your post. I am 36 now, and diagnosed at 14, like your son. I wasted my time in chiros, until the scoliosis was very advanced.
    So I suggest contact an specialist asap. In the mean time I strong suggest practising sports specially swimming.
    The most important thing that I have learnt is to do sports, in order to put my body stronger than it was.
    I had surgery at 27, and from it I have been practising swimming and pilates. I really think that the most important thing is to conect with the own body, doing yoga, pilates, and others.
    Please be free to ask anything.

  14. #14
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    Location
    Yuma, AZ
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    2nd opinion

    I would love to find out what degree he's at. My daughter is at 66, has a lumpy spot where her curve is and her right shoulder sits much higher than the left...

    We did a brace, it didnt' help at all. Even though she's only 12, her ortho said surgery MUST HAPPEN fast, because in 3 months she progressed 10 degrees on her curve.. she will have some growth in her lower back, legs, etc. but the section he fuses of course will not grow. We're good with that and so is she...

    Definately, find a second opinion!! Be wary of Chiro's. Our chiro's in our area won't touch a scoliosis patient (one will I think, but the one I see for my back adjustments, said that with progressed curves, that adjustments and such are not helpful and can possibly harm a child). Therapy may help any pain, but it wont' change the curve(s) according to our ortho surgeon.

    Explore your options and definately advocate for your child... only YOU are going to do that the best! Keep at it!

    good luck!!

    Jen

  15. #15
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    Wink Not all chiropractors are created equal

    With all due respect to those and their opinions of chiropractors and I mean this sincerely, so please don't attack me . I have noticed quite a bit of chiropractic bashing on this forum. Now, I do agree that there are many chiropractors out there that have given the profession a bad name. More than I care to admit but just like in all professions there are good apples and bad apples.

    Chiropractors are not trained in surgery, just like surgeons aren't trained in chiropractic. And in all fairness to the opinions on this forum, I do agree that the general chiropractor without any further training in scoliosis treatment shouldn't be treating scoliosis patients. But beyond the basic education, there are a multitude of continuing education classes, seminars and certifications that these doctors, yes, they are doctors, can obtain after their chiropractic education is done.

    I saw the post about comparison about medical education and chiropractic and I don't think it is a fair comparison in that both fields are completely different so how can you compare?

    Did you know that there are 5 National Boards that these docs have to get through and in some instances state board exams they have to take? They are regulated by the states Medical Quality Assurance department and are accepted on most health insurance plans. If they were such "quacks" why would licensure even be allowed?

    I do believe that alot of animosity towards the profession is a fear of the unknown and/or understanding the profession.

    I have seen references to "subluxations" and curing the world...blah blah blah..but have any of you spoke with a chiropractor that is biomechanically based with backgrounds in physics, human kinetics and neuromuscular reeducation?

    The CLEAR Institute, I have noticed, is really trying to make a difference within the scoliosis community. And even though you may see websites that steer you away from surgery, I am sure you will see surgical sites that promote it. A surgeon is going to want to do surgery. A chiropractor is going to want to utilize non-invasive means to achieve an outcome. Why are some on this group so steadfast against a group that is only trying to find a better way to deal with scoliosis and to truly understand the nature of the condition? A group that is trying to control the curve in its early stages so that it won't progress to surgical status...is that so wrong? Isn't that what we all want? Do we really want our kids going through surgery if we don't have to? What have your experiences been to warrant such an attack so quickly?

    I think before posting opinions on this site that are so blatantly harsh you need to let these people come to their own conclusions.

    I do not think it is fair to state that all chiropractors are crooks, deceitful, and quacks. There are many that are scientifically based, who utilize physics, biomechanics and neuromuscualr reeducation.

    Just my point of view. I am sure someone will have somethng to say about it. Please be kind as I just joined this site and would really like to stay!
    All in the spirit of fairness....

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