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Thread: "Driving people away" - who, why, and does it matter?

  1. #16
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    Curvycakes, love your comment about being a "hippie counselor". Your comments are well stated.
    Thanks for chiming in.
    Susan
    2011: Degenerative Adult Onset Scoliosis @65
    25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
    Severe disc degen thoracic & lumbar stenosis L4
    Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    3/2013, Dr. Hu @ UCSF
    Postop hernia @ ALIF incision repaired 2014
    8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrumentation & revision fusion T3-T6
    Proximal Junctional Failure w/ SCI

  2. #17
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    There was some whinging about the need for a private group for PT and bracing. This is an imaginary problem. So I'm bumping this.
    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. #18
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    If there is some need here is about a moderator not allowing you to defame non surgical options at least in the pathetic way you are doing it.

    Quote Originally Posted by flerc View Post
    Is incredible in a new thread all what you may say according your irrational thinking.

    Certainly it would not be needed to be a scientist (as you are saying you are), to realize that only someone with not a good background and training in logics may claims something of all of that.

    If you don’t know about some case you say ‘there is no evidence’, if you don’t know why something works you say it cannot works, if you have not idea about something, you talk as if you know about it and if certainly there are reasons to think that may works, you say that there are not and only may works if it would be magic.
    If this forum would be moderate in a serious way, you could not be in non surgical sections.

    Do you know what is a brace, how it works? Why are effectives in stopping and even reducing curves in kids/teens? Do you know what is the Spinecor? Do you know how it works? What do you know about physiology? What do you know about something in order to say what you are saying here? It seems that absolutely nothing of course!
    Just only a recent example on thousands.

  4. #19
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    On imaginary problems.

    My factual comment in the thread today was that a large contingency of patients pursuing all manner of non-surgical options has left this forum to create their own private forum. Since that is a demonstrable fact, I can only imagine that you're saying the *problem* is imaginary. It may well be an imaginary problem for you, but for myself, I greatly miss their contribution. It is not an imaginary problem for me.
    Last edited by hdugger; 01-09-2014 at 12:29 AM.

  5. #20
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    Certainly her unmoral work is very much pathetic but also effective.

  6. #21
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    If people had evidence they would be back here posting it. In the meantime, nobody is missing anything.

    Science is the only game in town.
    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."

  7. #22
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    Who may want to post their cases with someone as you doing what you are doing. I have recieved PMs about excelent outocomes and saying they don't want to post knowing what you would do then.
    Excellent work! Sure you are proud!

  8. #23
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    Quote Originally Posted by Pooka1 View Post
    Science is the only game in town.
    Quote Originally Posted by flerc View Post
    Someone knows how do you say 'CARADURA' in English?
    The same request again.

  9. #24
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    Quote Originally Posted by flerc View Post
    Who may want to post their cases with someone as you doing what you are doing.
    I'm not talking about posts about cases in general. I'm talking about before and after radiographs like we see so often in the surgical section and like are conspicuous by their absence in the non-surgical sections.

    Do you think anyone would know who Martha Hawes is if she didn't continually post her radiographs?

    Are people posting before and after radiographs on the private group showing improvement like Hawes does?
    Last edited by Pooka1; 01-09-2014 at 09:08 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."

  10. #25
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    I'm not in any private goup, I don't know. Probably people just only trust in what they says.

  11. #26
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    And of course only you may expecting people posting their Rx here.

  12. #27
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    Quote Originally Posted by flerc View Post
    they don't want to post knowing what you would do then.
    Hi flerc,

    I know everyone is different, and you haven't been on the forum as long as some of us. So for you and others who only joined in the past few years, I want to share something. When I first joined this group and someone would ask about VBS, there were a couple of members (one in particular) who would relentlessly attack me saying that the surgery was experimental, etc. I explained over and over that: (a) I was just disseminating information and folks could made whatever decision they wanted based on that information; and (b) that I had complete faith in the procedure, so much so that I allowed it to be performed on my son.

    The point is that I stuck around because I was an open book when it came to VBS. I wanted those parents who were interested (and for whom VBS might be a good option) not to have to find out about it by accident like I did. If someone had questions on VBS, I would either try to answer it myself, or if I didn't know the answer, I would try to get the info from the doctor(s) themselves. Those who first jumped on board and began performing VBS were guys like Betz & company, Hresko, Luhmann, Oswald, Vitale, Skaggs, Schwend, etc. so I was more than comfortable sharing information that came from guys with reputations like theirs. I never made any false claims or 'guaranteed' that VBS would work, but I stood by my belief that it was a viable option for some patients and had nothing to hide.

    Maybe I am more stubborn that most (I'm sure my husband wouldn't argue that point), but I can't see all these people leaving the forum simply because someone questioned them or asked for proof of what they were saying - or even in their view, was giving them a hard time. I would think it would be more important to make sure others knew about any options that had a chance of helping others.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  13. #28
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    Quote Originally Posted by mariaf View Post
    Hi flerc,

    I know everyone is different, and you haven't been on the forum as long as some of us. So for you and others who only joined in the past few years, I want to share something. When I first joined this group and someone would ask about VBS, there were a couple of members (one in particular) who would relentlessly attack me saying that the surgery was experimental, etc. I explained over and over that: (a) I was just disseminating information and folks could made whatever decision they wanted based on that information; and (b) that I had complete faith in the procedure, so much so that I allowed it to be performed on my son.

    The point is that I stuck around because I was an open book when it came to VBS. I wanted those parents who were interested (and for whom VBS might be a good option) not to have to find out about it by accident like I did. If someone had questions on VBS, I would either try to answer it myself, or if I didn't know the answer, I would try to get the info from the doctor(s) themselves. Those who first jumped on board and began performing VBS were guys like Betz & company, Hresko, Luhmann, Oswald, Vitale, Skaggs, Schwend, etc. so I was more than comfortable sharing information that came from guys with reputations like theirs. I never made any false claims or 'guaranteed' that VBS would work, but I stood by my belief that it was a viable option for some patients and had nothing to hide.

    Maybe I am more stubborn that most (I'm sure my husband wouldn't argue that point), but I can't see all these people leaving the forum simply because someone questioned them or asked for proof of what they were saying - or even in their view, was giving them a hard time. I would think it would be more important to make sure others knew about any options that had a chance of helping others.
    Maria, nicely stated. Apt response.

    And of course it is unimaginable that you would leave in a huff if someone asked you to post before and after radiographs as we have seen so often in the PT section. ;-)
    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
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    As is so often the case in these discussion, I no longer have the slightest idea what you are talking about.

    You restarted this discussion, it appears, in response to my saying that I missed the contribution of all of those regular members who were pursuing conservative treatment who have left this forum and joined a private group. Yet, now, you appear to be talking about something else altogether - the "show us your xrays!" greeting which appeared to make several new members quickly depart the forum. Again, these are clearly clearly, *not* the members I was discussing, and these people did not join the private forum I was discussing. But, no matter, apparently we're discussing something else altogether.

    So, assuming now that you're not actually responding to what I was talking about but discussing this other thing instead, let's examine your hypothesis on that topic more closely.

    Your hypotheses: People talking about their experience are "making claims" (and not just sharing their experience, as one might normally understand it). Because you believe they are "making claims" you also believe that they should show evidence to back up those claims. Immediately upon entering the forum. As a kind of how-d-do. Thus, I suppose, every patient who ever entered the forum saying that they'd gotten a great correction would be "making a claim" and, thus, be greeted with "Well, let's see how great we think it is. Let me eyeball your xrays to make sure you're not hiding anything" which is, more or less, how the people you're discussing were greeted.

    OK, well, let's try out that hypothesis in the surgical section. The next new patient who shows up claiming they've gotten a "great correction" Flerc and I will charge in there and demand to see their xrays to determine for ourselves just how great we think their correction is and let them know that they *must* show us their xray to prove that they're not "hiding something" with their bold claims. Let's see how that goes over.

    [Maria's post slips in: The difference, IMO, is that you are talking about a single person's response. I'm assuming other people were supportive or you would not have stuck around. In the case I'm describing, there was a four-person pile up after the first post of people demanding xrays, suggesting people were hiding something, and openly discussing whether or not this or that poster was a plant. One would have to be *very* hardy indeed to stick around after that. I'm hardy myself, and even I would have left. Why would *anyone* remain in a place where they were so greeted?]
    Last edited by hdugger; 01-09-2014 at 09:49 AM.

  15. #30
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    Quote Originally Posted by mariaf View Post
    When I first joined this group and someone would ask about VBS, there were a couple of members (one in particular) who would relentlessly attack me saying that the surgery was experimental, etc.
    Did Pooka1 attack you as she did with hundreds of members here until they left the forum? I only will believe that if I you quote it.

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