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Thread: So glad I found you guys!

  1. #31
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    Some forums such as ProBoards lets you change your display name but VBulletin doesn't. I really should have put more thought into my handle but I was anxious to start posting.

    I am a huge fan of small furry critters, especially rodents (have seven chinchillas) and of course spiny mice are really cute and this is all about the spine... so... it fits.

  2. #32
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    Quote Originally Posted by Elisa View Post
    Some forums such as ProBoards lets you change your display name but VBulletin doesn't. I really should have put more thought into my handle but I was anxious to start posting.

    I am a huge fan of small furry critters, especially rodents (have seven chinchillas) and of course spiny mice are really cute and this is all about the spine... so... it fits.
    So cute!

    Here's one I like...

    http://cuteoverload.com/2009/12/26/i...hold-the-sour/

    Did you know Syrian hamsters have no limit when it comes to alcohol? It's true!

    Also, hamsters cook jello...

    http://www.flickr.com/photos/victori...7622864971354/

    I am a huge fan of rodents. I have guinea pigs. More specifically I take as many pigs as I can from rodent rescues and animal shelters. I have five at the moment, 4 from a rodent rescue and one from the shelter in Calgary, Alberta that we adopted in 2004 when we lived there. He's a Canadian citizen (never renounced his citizenship) and sometimes pines for the Rockies I suspect.

    There are too many pigs in need of homes. Adopt, don't shop.
    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."

  3. #33
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    Jan 2008
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    Oregon
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    off topic-spiny mouse

    Hi Elisa,

    I am sure you can re-join with another name. Then you can start signing in and posting under that handle. There are others here who have changed their handle for whatever reason. It is not a problem I do not believe (Linda will correct me if I'm wrong).

    BTW, I LOVE your photo of the cute little mouse! I am definitely an animal lover too. We have 3 dogs, 3 cats, 3 chickens (egg hens), 4 parakeets, and a parrotlet.

    Take care,
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  4. #34
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    Nice to see other animal lovers out there. Those pics of the hammy are so cute. Love the Jello one, lol.

    All seven of my chinchillas are rescues. A couple I took in about a year ago b/c they had been quite neglected, a couple more were about to be fur coats but were spared b/c the guy surrendered all his herd to the SPCA, one other I had flown over from the mainland b/c he was sitting in a shelter there and it was unlikely he'd be adopted any time soon b/c of the remoteness of the place. And my first guy was found wandering around outside so we captured him, no one claimed him so we kept him. He's the one that started all this craziness and I still have him. It's been about five or six years now. Might as well mention the three lady kitty cats that are all rescues as well: Alice, Molly and June. That's it!

    Still reading and reading and thinking but in a bit I'm taking my son shopping again to see if we can find some jeans. We tried last week but I left it too late in the day and neither of us were in the mood to shop anymore.

    I'd like to take some pics of his back and post them but I think I'll wait a bit b/c we've been obsessing over his back lately with the chiro visits and all and I want to give him a bit of a break before I do a photo shoot b/c I don't want him to feel self-conscious. I will take a pic of the photocopy x-ray and post it but it isn't the best quality but you can definitely get the idea.

    I'm starting to feel I have to watch what I say to him. We had a bit of snow yesterday morning and it was a bit icy and I told him to be careful not to slip on the ice otherwise he might twist his back. Then I stopped myself and told him to just be careful of the ice. Kinda like the guy who's working in the garden with one hand and you ask him if he needs a hand.
    Last edited by Elisa; 11-20-2010 at 01:15 PM.

  5. #35
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    I just took these three pics of a photocopy of one of his x-rays. Obviously not the best pics but it does give a good idea of how curvy he is. Comments?

    http://i241.photobucket.com/albums/f...lioboy/003.jpg

    http://i241.photobucket.com/albums/f...lioboy/002.jpg

    http://i241.photobucket.com/albums/f...lioboy/001.jpg

    Edit: This x-ray was taken from the front as his twist and hump are on his right side, but you guys probably have that figured out already b/c you're way more familiar with x-rays than me.

  6. #36
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    I really enjoyed having today off and I pretty much spent the whole time reading and researching scoliosis. I really found the u tube videos interesting and most of them were of girls. I was hoping to view a few boy videos but I couldn't find much. I even watched videos of the actual operation and metal work and early recovery and was touched by their stories.

    That said, it seemed most of these surgeries were for mainly obtaining a straight back, cosmetic so to speak and yes some of their backs were extremely twisted and contorted and some complained of pain, but mostly it seemed that people got this surgery for cosmetic reasons.

    I'm looking at my own son's spine/body and thinking that yes he has a big curve and a right rib hump, but he's functioning fine and no one other than the family suspects anything is really wrong.

    I'd hate to put him through this surgery if in the end it's only for cosmetic reasons b/c that's way too much of a risk that I/we are willing to take right now.

    And the pendulum swings.

  7. #37
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    Quote Originally Posted by Elisa View Post
    I really enjoyed having today off and I pretty much spent the whole time reading and researching scoliosis. I really found the u tube videos interesting and most of them were of girls. I was hoping to view a few boy videos but I couldn't find much. I even watched videos of the actual operation and metal work and early recovery and was touched by their stories.

    That said, it seemed most of these surgeries were for mainly obtaining a straight back, cosmetic so to speak and yes some of their backs were extremely twisted and contorted and some complained of pain, but mostly it seemed that people got this surgery for cosmetic reasons.

    I'm looking at my own son's spine/body and thinking that yes he has a big curve and a right rib hump, but he's functioning fine and no one other than the family suspects anything is really wrong.

    I'd hate to put him through this surgery if in the end it's only for cosmetic reasons b/c that's way too much of a risk that I/we are willing to take right now.

    And the pendulum swings.
    What makes you think they had surgery for cosmetic reasons?
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  8. #38
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    Other than the way their back/body looked they didn't complain about anything else. Like I said, every video pretty much was of girls and they complained about how they looked. I didn't hear them say anything much about how they felt physically and that worries me. I would like to see some videos of boys, particularly young teens.

  9. #39
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    The vast majority of juveniles, adolescents, and teens with scoliosis, do not have pain. Usually, surgery is undertaken to stop the progression of curves.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  10. #40
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    Oct 2009
    Posts
    89

    Some Additional Thoughts

    Hi Elisa

    I agree with Linda. A curve can progress 1-2 degrees per year through adult life. I know everything I am trying to do for my daughter is all about trying to help minimize the impact of scoliosis on her for the next 70+ years.

    Since I have a 9 yr. old girl, I am in no position to make any recommendations for a 14 yr. old boy. The only thing I can say is that he may or may have not gone through his growth spurt. If not, there may be a sense of urgency to get him in a brace or VBS (with hybrid rod). His curve may be too large for VBS/Hybrid Rod.

    It is very important to get every option on the table.

    Let's discuss CLEAR for a moment. And I have been doing a lot of research myself on CLEAR (even though we have done it a couple times) and other techniques (Pettibon, ARC3D, etc.). I have learned that CLEAR, ARC3D, and other "methods" are really programs or names created for a non-surgical treatment of scoliosis. Often, these different programs use some of the same techniques. For example, someone in a post mentioned Pettibon. I know when we did CLEAR we did a lot of Pettibon exercises using weights.

    Here is a site I found that I like: www.scoliosis3d.com. It discusses several different methods very similar to CLEAR. However, I like this site (Dr. Morningstar) because he also supports bracing (with Cheneau brace).

    I cannot give you advice on what to do with your son, but I will tell you what I would do if it was one of my sons. I have 4 sons, 3 of them older than your son (and I have 3 daughters). I would do the following for my son:

    1. Brace him immediately with the best brace I can afford, maybe a Rigo-Cheneau brace, or some hard brace (definitely not the SpineCor brace), and stop any curve progression, and maybe get some curve reduction, but at this point the immediate goal would be to stop any further progression, especially if he is growing. When he is growing is when the curve can progress significantly. Please don't assume the curve is stable.

    2. I would consider seeing a chiropractor who specializes in scoliosis, maybe from CLEAR or ARC3D. I would find one that supports bracing (therefore it would not be CLEAR). I would have my son in a 2 week intensive program (not sure if ARC3D offers it, but CLEAR does) and wearing a hard brace. Based on the stiffness of his back, they may be able to get it down 10-20 degrees, and then use bracing to hold it along with some home exercises. There are no guarantees it will work, like there are no guarantees with surgery.

    3. Seek the advice ASAP of 2-3 pediatric orthopedic surgeons specializing in scoliosis.

    I am sure some on this forum will disagree with me. So please understand, I am just telling you what I would do. It may or may not work. But I think there is a sense of urgency due to your son being only 14.

    My daughter is only 9 and will hit her growth spurt around 11 (maybe). I feel an incredible sense of urgency to get her curve reduced and stable as much as I can before she is 11. And I will have her in the best hard brace I can afford when that time comes.

    Unfortunately, cost of treatment plays a role in all of our decisions. If I could afford it I would have my daughter at the Manhattan chiro doing CLEAR/Pettibon every 3-6 months for an intensive 1-2 week treatment program. But I cannot afford it. So, we have to rely on a brace (not the one I really want, but again, an issue of paying for the one I want) and we have to rely on home exercises. After the initial investment of some equipment, for the most part, the home exercises are free.

    Please let me know if you have any questions.

    Mike

  11. #41
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    Oct 2009
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    89

    Vancouver - Miss It!!

    Hi Elisa

    On a different note, I don't know if you read my PM, or ever received it, that I worked and lived in Vancouver for a year. One of the most beautiful places I have ever been.

    And I used to go to Vancouver Island a lot, taking the ferry over to the island. Maybe from Horseshoe Bay (I don't know if that is right, or it was some other bay). I had my family in Vancouver with me for awhile and we lived on Robson street.

    You are fortunate to live in such a beautiful place. We used to go to Vancouver Island because there was place we would rent a cabin and we would kayak all around. The kids loved it.

    I do wish I had taken the time to ski while I was there, but never did. This was probably about 10 years ago. I went back one time with the family.

    I just wanted to let you know that I have lived there and miss it very much. My wife who has never wanted to leave our home in Columbus, OH, said for the first time, that we could sell the house and move to Vancouver.

    Please let me know if you have any questions, or you just need someone to bounce off some ideas. We can do it on the forum, in a PM, through email, or over the phone.

    Mike

  12. #42
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    I think whats most important right now is to find out from a qualified orthopedic surgeon what his true curves are and see what the progression has been and go from there.

    Regarding bracing, and I say this only from my own experience, my sons surgeon said to him that at the point he was at bracing would actually do more harm then good. Its been a while but I think the thinking was that because the curves had reached a high degree a brace would push the curve into the vital organs. Of course this could also be related to the amount of rotation and my sons rotation was high. My own feeling from seeing photos of your xrays is that they do look very similar to my sons xrays as in the curves are quite significant.

    Regarding cosmetic reasons for doing surgery, that only becomes a bonus from having it done. I would never have allowed it if that was the only reason for doing it. It's the long term future benifits that you must consider.

    And by the way I realize its a long way but the doctors at Sick Kids in Toronto are terrific if you are looking for more options.
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  13. #43
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    [QUOTE=scoliboymom;111816]I think whats most important right now is to find out from a qualified orthopedic surgeon what his true curves are and see what the progression has been and go from there.

    Regarding bracing, and I say this only from my own experience, my sons surgeon said to him that at the point he was at bracing would actually do more harm then good. Its been a while but I think the thinking was that because the curves had reached a high degree a brace would push the curve into the vital organs. Of course this could also be related to the amount of rotation and my sons rotation was high. My own feeling from seeing photos of your xrays is that they do look very similar to my sons xrays as in the curves are quite significant.


    Elisa,

    I totally agree with scoliboy mom's post above. I know posters above are sincere in their interest in giving advice for certain types of treatment, but you must remember, lay advice from non-medical professionals and/or lay parents is not what you need. Your son's curve looks very significant, and you need to discuss it with a qualified pediatric orthopedic surgeon. No one else is qualified to give you advice on your son's treatment. I am glad that your are researching and educating yourself as much as possible. You are a great mom, and you are doing the best possible job for your son.

    Take care,
    Last edited by leahdragonfly; 11-21-2010 at 09:52 AM.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  14. #44
    Join Date
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    Location
    NC
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    Quote Originally Posted by Elisa View Post
    That said, it seemed most of these surgeries were for mainly obtaining a straight back, cosmetic so to speak and yes some of their backs were extremely twisted and contorted and some complained of pain, but mostly it seemed that people got this surgery for cosmetic reasons.
    At the cost of these surgeries, there is not a single chance insurance companies would pay out just for a cosmetic procedure.

    So that can't be right from that standpoint.

    Further, Josh Woggon, head of "research" at Clear and resident "genius," claims that promises from surgeons that there will be any cosmesis gains from surgery are lies. So whatever reason surgeons are doing this surgery, they do NOT include cosmesis.
    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."

  15. #45
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    I seriously doubt you will find a board certified orthopedic surgeon who would brace a curve much of 50*. That doesn't occur.

    Certain Spinecor providers will brace very large curves per at least one video on youtube. It's outrageous.
    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."

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