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Thread: Pre-op appt. - some good news

  1. #46
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    Mary Lou,

    I think it's safe to say that you and I have been around a while and I have nothing but respect for you - and I'll go out on a limb and guess (at least I hope) that you feel the same way.

    Now, even if some folks seem like "newbies" because of number of posts, etc. that doesn't mean they haven't been reading or following or that they don't have just as much to share (I know you weren't saying that BTW). My point is that perhaps they are the type that feels the need to speak up only occasionally.

    I understand what you are saying in your post but I KNOW most of the people that have "clashed" with Sharon. BTW, Terri's posts were not random attacks on Sharon just to chime in and join the gang. Terri had posted previously and felt that Sharon responded rudely. I don't wish to get into that - just to point out that she wasn't just jumping on the bandwagon - in fact, she exercised great restraint waiting as long as she did to chime in IMHO.

    My point is, these folks are NORMALLY nice, calm folks that are eager to help ANYONE (and I mean to go above and beyond to help - I have SEEN it). Even at the beginning of all of this, they had Sharon's daughter's best interests at heart and voiced their honest concerns that perhaps returning to school full time after 3 weeks was a bit too optimistic and Sharon seemed unable to accept what they were saying even though some of them, or their kids, have LIVED it. So I guess what I am saying is that for some reason Sharon seems to bring out the worst in these people. My guess is the reason is her sarcasm (seems when anyone questions her she can't control her tongue - or fingers in this case, I guess) and she also seems to know everything about everything - from scoliosis, to parenting, etc. - her way is best - and she assumes things about other people that are not true (i.e., their intent) and I just can't convince myself that it's all of these OTHER people, including ME that are just picking on her WITHOUT reason.

    And as far as Sharon bringing up Private Messages - I'm sure that we have ALL gotten PM's about others saying "you're right and so-and-so is wrong". I know I have - but I never posted about it! I think it's a bit seventh grade to bring it up actually. Just fuels things even more. And she's bothered by Pam's "quote" marks - I mean c'mmon!

    I agree with you, Mary Lou, in that I hope the bickering stops and we can get back to business.

    But I ask EVERYONE that if someone else posts something that you don't agree with, try to respond CIVILLY and think before you type something that sounds like it came from a teenager having a hissy fit!

    Again, Mary Lou, I respect you enormously and I have never known you to be anything but a very valuable asset to the forum. I hope you, in turn, respect my style of calling it like I see it - because unfortunately (or fortunately, depends how you look at it) I don't know how to be any other way.

    Best regards - and I hope your family is well.
    Last edited by mariaf; 03-25-2008 at 02:30 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  2. #47
    Join Date
    Jan 2006
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    near Philadelphia
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    1,260

    Two more cents

    You know, as (mostly) women on this forum, I think we naturally seek to establish relationships with each other. We are perhaps people who ordinarily wouldn't be mixing together, but our common problem brings us together. In that way we are sort of like family -- we are thrown together rather than choosing each other. In that context, it's natural that the stronger personalities within our group are going to clash.

    My wish is that everyone keep in mind that we don't want to scare off anyone who's logging onto this forum for the first time.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  3. #48
    Join Date
    Jan 2006
    Posts
    513
    Pooka,

    I think we have an ignore button. I will see if I can remember how it works.

    If you go to your private messaging system, look to the lists on the left of the screen. There is a buddy, ignore list system. I think if you enter the name on the ignore lists, you won't see their posts.

    Best wishes in your upcoming surgery for your daughter! Don't let all the hoopla keep you from getting the support you need.

    I think that if you started a thread to update your support system, and if you ask someone to refrain from posting on that thread because you find their posts inflammatory, that they should refrain from posting.

    I don't think anyone owns a thread, but the point of this forum is support and information. Without support, the information is useless. We all need the support to get through our crisises with scoliosis.

    Best wishes!
    Last edited by cherylplinder; 03-25-2008 at 11:45 AM.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  4. #49
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    Cheryl! Thank you!

    Quote Originally Posted by cherylplinder
    Pooka,

    I think we have an ignore button. I will see if I can remember how it works.

    If you go to your private messaging system, look to the lists on the left of the screen. There is a buddy, ignore list system. I think if you enter the name on the ignore lists, you won't see their posts.
    Indeed you are correct!

    I am now going to apologize to all for not finding that button earlier. That was a bad error on my part. So much nonsense.

    Quote Originally Posted by cherylplinder
    Best wishes in your upcoming surgery for your daughter! Don't let all the hoopla keep you from getting the support you need.

    I think that if you started a thread to update your support system, and if you ask someone to refrain from posting on that thread because you find their posts inflammatory, that they should refrain from posting.

    I don't think anyone owns a thread, but the point of this forum is support and information. Without support, the information is useless. We all need the support to get through our crisises with scoliosis.

    Best wishes!
    Thanks so much for the good wishes.

    One thing... I am not looking for daily affirmation. Almost the entire point of being here is to post what my orthopod and surgeon say and to hear what other orthopods/Surgeons say.

    If it differs, then I do further research to figure out why they differ. An example is the difference between when other kids have returned to school and what my orthopod and surgeon and hospital material say. I will report back on our data point when it happens for anyone who cares at that point.

    What I am NOT here for is to have some self-styled expert think she knows more than an orthopod/surgeon and or suggest that if anything differs from what her surgeon does then the other surgeon is automatically not a scoliosis specialist or is otherwise an idiot. Since our surgeon is in fact an expert in this area, the mere fact that she concludes that in her mind is evidence of her inexperience. It's comical.

    Still, I don't mind Pam posting in my threads if she has actual DATA and if she refrains from her "logical" conclusions. There is a reason why some folks have a problem with her, whether certain other folks acknowledge it or not.

    Last, Maria, I guess labeling my reference to the PMs as middle school antics at least lets you avoid addressing yourself to the actual point that at least five people are willing to note a problem with Pam. Is it really surprising news? I'll bet she has behaved that way all along and has driven away others.

    Chris... I agree.

    sharon
    Last edited by Pooka1; 03-25-2008 at 01:22 PM.

  5. #50
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    Quote Originally Posted by terri watkins
    Yes I have only a few posts ... because when I did try to post in the past AKA POOKA WAS A BUTTHOLE ... always jumping in with crap and not allowing anyone to focus on the topics and questions asked....I do read everything I can on here daily to gain all the knowledge I can but I have learned nothing from Sharon aka pooka except that she already knows everything and that it's all black and white and that she is foolish
    I agreed the horse stuff was off topic. I won't do that again or at least I won't devote a post to off-topic material again. That was wrong.

    Love,
    The foolish BUTTHOLE BOT

  6. #51
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    Quote Originally Posted by Susie*Bee
    Mary Lou-- Thank you. I've had company Easter weekend, and it's taken forever to read up on what I missed on the forum-- and it has left me feeling so stressed out just now. You summed up my own thoughts so well.

    Sharon-- I'll be praying for S tomorrow. Please let us know how the surgery goes when you get a chance "after"...
    In re Mary Lou... it's rare to see such brave posting. It is valuable because it is entirely constructive. She is to be commended and admired.

    Thanks Susie for your good wishes. We are confident going in.

    Best regards,
    sharon

  7. #52
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Susie Bee,
    You're welcome, I felt someone had to say it and now that I did, I feel much better.

    Maria,
    No need to go out on a limb---I respect you completely. I value you as a friend (NY accent and all ), I trust your judgement, I feel comfortable asking you anything, you are one of the people who has helped me the most on this forum, shall I go on? I truly value you and our friendship. Please DO NOT change. I'm glad you call it like you see it.....I tend to do that myself sometimes (maybe that's why we get along so well).

    There are a lot of things on this forum that I don't agree with--whether it is a person, a treatment plan, or whatever. We are all different and we will never all agree on everything. I just want our forum back to what it is meant to be--a place to share information and support.

    Sharon,
    Best of luck tomorrow. Although the surgery will finally be over, you still have a long journey ahead of you. Stay strong.

    Mary Lou
    Last edited by Snoopy; 03-25-2008 at 02:08 PM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  8. #53
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Sharon,

    Wishing your daughter, you & the rest of your family all the best for tomorrow. I'm so glad her Risser puts her out of danger of Crankshaft and that the lumbar curve is compensatory.

    I found your initial post on this thread extremely informative - keep up the good work & join me in ignoring the negative elements on this forum. (Today's resolution, am intending to keep it but who knows?)

    Will be thinking of you tomorrow.... I'm sure it'll be fine.

    xx
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  9. #54
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    ny
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    Quote Originally Posted by RugbyLaura
    keep up the good work & join me in ignoring the negative elements on this forum.
    Boy, for people who are ignoring the "negative elements" you and Sharon sure do bring them up in every single post.

    I think Mary Lou's plea was ENOUGH ALREADY!!!!

    Grow up, please and stop bringing up old arguments so we can all move forward.

    PLEASE!! (sorry I don't have time to do the big red letter thing).
    Last edited by mariaf; 03-25-2008 at 05:10 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #55
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    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    Just wanted to send my good wishes your way for tomorrow. Will be thinking about you. Let us know when you can how things are going. Cyberhugs to you and your family.
    Ramona
    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

  11. #56
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    Quote Originally Posted by Snoopy
    Sharon,
    Best of luck tomorrow. Although the surgery will finally be over, you still have a long journey ahead of you. Stay strong.
    Let's all stay strong. Thanks for everything.

    sharon

  12. #57
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    Quote Originally Posted by RugbyLaura
    Sharon,

    Wishing your daughter, you & the rest of your family all the best for tomorrow. I'm so glad her Risser puts her out of danger of Crankshaft and that the lumbar curve is compensatory.
    Thanks, Laura (is that right?). I just want to add that folks who have this surgery at lower Risser's aren't necessarily at high risk for crankshaft per what my surgeon said. I think it's important to add that he said that. I got the impression it isn't that common no matter the Risser but I don't know what he meant really.

    Quote Originally Posted by RugbyLaura
    I found your initial post on this thread extremely informative - keep up the good work & join me in ignoring the negative elements on this forum. (Today's resolution, am intending to keep it but who knows?)

    Will be thinking of you tomorrow.... I'm sure it'll be fine.

    xx
    Thanks. I just post the most high quality information I have. That means what the orthopod, surgeon, and hospital material say as best as I can relate it. Just by chance, because this isn't my field, I am bound to mis-report something or another. That might be the source of some issues that have come up on the forum. I will say I have been surprised and, at times, fascinated, by the variance in experience with this surgery. Truly every case appears different.

    In re negative elements, I post to certain unmoderated groups and thought I have overcome the "form versus substance" issue. That is, if the information is good, the form it is delivered in shouldn't matter. But I am ashamed to admit I haven't overcome it enough. I guess when someone implies I'm an incompetent parent for an imagined lack of picking an appropriate expert for my child's surgery, it's over my personal limit because it involves someone other than myself. Still, I'm ashamed that anything is over my limit at this point... it's ridiculous. Folks on the other groups wouldn't recognize me reacting like this.

    Sorry for going on and on. Thanks again so much for the kind thoughts for S.

    Best regards,
    sharon
    Last edited by Pooka1; 03-25-2008 at 06:20 PM.

  13. #58
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    Quote Originally Posted by scoliboymom
    Just wanted to send my good wishes your way for tomorrow. Will be thinking about you. Let us know when you can how things are going. Cyberhugs to you and your family.
    Ramona
    Thank you very much, Ramona. I'll try to check in as soon as S is through the hardest part.

    Best regards,
    sharon

  14. #59
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    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I hope S's surgery goes really well and will look forward to reading about it.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  15. #60
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    Quote Originally Posted by laurieg6
    I hope S's surgery goes really well and will look forward to reading about it.
    Thanks, Laurie. I'll post when I can.

    Here we go...

    sharon

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