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Thread: My Adult Scoliosis Story

  1. #121
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    Sharon,
    #76 [Rohrer] I honestly don't think you have AIS.
    #77 [Pooka] I agree with Rohrer that is probably isn't AIS but who knows.
    #109 [Pooka] You have the most common type and size curve for AIS (small T curve) if it isn't just a functional curve.
    #120 [Pooka] You are a textbook AIS.

    So see Sharon you contradict yourself as well, (some have said I do, I think I just don't explain myself that well sometimes, but maybe at times I have)
    Straight away there's an exception to the rule when rkochis says he too has a LLD related to his scoliosis.
    Its hard for me to believe his curves at 63 degrees and 48 degeres are going to bend out or that the LLD wasnt a contributing factor in his scoliosis progression.

    And for all the things you argued with me on in your first reply, the one thing you didn't bring up was about whether or not if a structural problem begins in scoliosis where its a concave or convex or both.
    You avoided that, but answered everything else like an authority on it.

    It annoys me that no-one ever says "What Scott is saying actually does kind of make logical sense. If hes wrong, and only has propreoception than his creative mind has done quite an amazing job."

    Not only that you all claim 'proprioception' as why I must be wrong, and I feel like you are treating me like a teenager in a growing body, not the adult in a skeletally mature spine I was when this 'injury' I allege started.

    You say that you are trying to help me learn something Sharon but all you are essentially doing is infuriating me, and you know it, and you do it on purpose.
    I feel like I have to do battle with you every time I come here just for the right to be myself, It's no wonder I always leave.
    I'm better off getting no support at all than having to deal with you, that's the honest truth.

    I could argue back and forth with your earlier points but honestly that's a merry go round I've decided to take control of by choosing to get off.
    You can choose to think you won if you want to, but technically I win because I wont have to put up with you anymore.

    I never even get a chance to get comfortable and take the time I'd like to properly to respond to others because I'm always constantly having to defend myself against you.
    I'm going to respectfully ask you Sharon from now on keep your opinions to yourself.
    You could actually provide support and use the scoliosis knowledge you have to help me in a constructive way but you choose not to.
    You could look for and find the papers where it was hypothesized about lordosis in kyphosis, or find other ways to help like providing feedback on my website for example but you'd rather constantly argue with me in a manner that constantly infers that I must be wrong and must be losing it when the real truth is that none of you have actually taken a good look and feel of my spine to know exactly what it is I'm trying to show and describe to you.
    I'm not going around in circles with you anymore.
    Really if you cannot be open minded, and also offer a path to see my claims proven wrong then you shouldn't automatically imply that I'm mistaken and jump to the conclusions that I'm not thinking clearly and continue to imply that and inflame things with me.
    Also its not fair that you use 'science' to consistently refute my claims about my own scoliosis when I don't have access to or the means to the scientific tools that could prove I'm right, and you don't advocate for that, do you? No.
    This is supposed to be a support group and what I get from you is the exact opposite.
    Please don't post on the thread I started of 'My Adult Scoliosis Story'
    I didn't choose to have scoliosis, but I can choose for YOU NOT to be in THAT story, so get lost, and 'whatever...' to any forthcoming retort you come up with in advance.
    Don't bother, because I don't care.
    Last edited by sjmcphee; 02-05-2016 at 05:11 AM.

  2. #122
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    Quote Originally Posted by sjmcphee View Post
    Sharon,
    #76 [Rohrer] I honestly don't think you have AIS.
    #77 [Pooka] I agree with Rohrer that is probably isn't AIS but who knows.
    #109 [Pooka] You have the most common type and size curve for AIS (small T curve) if it isn't just a functional curve.
    #120 [Pooka] You are a textbook AIS.
    You are textbook AIS. But your curve is so small that I think it is more likely due to the LLD. If it was larger or rotation was shown on radiograph then it would be AIS for certain and not a functional scoliosis due to the LLD.

    I don't think anyone has shown that LLD can't produce curves that resemble textbook AIS.

    The only way to know is have a surgeon look at the radiographs and tell you if there is rotation. I think it is too small to use the bending out test because even if it was AIS, I bet you could bend it out completely. I am guessing the bending test must only apply to large curves.

    None of this should be news at this point.
    Last edited by Pooka1; 02-05-2016 at 09:25 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."

  3. #123
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    Had a little bit of a play around with my forum last night before I posted on here, testing adding youtube videos and images..
    Not exactly sure what the twitter buttons for, still got to figure that one out.
    This forum system has 'karma' points that you give each other when people are helpful...

    One thing I've always been disappointed with on the NSF scoliosis forum is that there isn't a general forum where members can get to know each other better by sharing things that aren't specifically scoliosis related.
    I've added 'Various Music, Whatever You Like, Come Post It!' to my forum as a start in this direction.
    I think I need a general forum, like a 'Water Cooler' or 'Members Lounge' or something...

    Please don't think I'm trying to take anything away from this site by playing with my own, I swear it is only a test site.
    I'm more than willing to share what I know about websites etc, if it can be of help to the people who own or manage this site.
    I made a new webpage yesterday as well, nothing exciting... It didn't take too long. Curve Patterns
    I'm trying to utilize existing code from the demo pages that come with the website template to make my own clean and tidy pages.

  4. #124
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    Quote Originally Posted by Pooka1 View Post
    By the way, do you rememebr king14? She was able to bend out BOTH her large curves. Neither was structural. I think that is EXQUISITELY rare! I think she should be a case study.

    Anyway, she had the thorax fused to try to save the lumbar from getting structuralized. Here's her radiographs...

    http://www.scoliosis.org/forum/attac...4&d=1348369570

    People reading this should not get any false hope that their large curves are not structural. Probably 99.99999% of large curves are structural (except in a false double which is actually a single structural curve pattern). And king14 still got a fusion even though she didn't have a structural curve so maybe all that matters is that you have a large progressing curve at that point.

    I am still amazed at king14... my amazement never went away.
    Did she actually post xrays of her bending out the curves, or just say she could do it?
    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

  5. #125
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    Quote Originally Posted by burdle View Post
    I read this and was quite shocked.

    Discussion is always valuable - and also being able to talk about things can soothe the mind. yes some of the discussion has got heated at times but it also has been acknowledged. When two people get together and discuss it is always valuable - communication is everything.

    You don't have to get involved if you don't wish to.
    This isn't even close to the first time that we've had this same conversation.
    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

  6. #126
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    Quote Originally Posted by LindaRacine View Post
    Did she actually post xrays of her bending out the curves, or just say she could do it?
    King14 did post her bending radiographs and Bederman said neither curve was structural!!!!

    http://www.scoliosis.org/forum/showt...ghlight=king14
    Last edited by Pooka1; 02-04-2016 at 09:37 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."

  7. #127
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    Quote Originally Posted by LindaRacine View Post
    This isn't even close to the first time that we've had this same conversation.
    Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
    I thought the site was for support?
    Last edited by burdle; 02-05-2016 at 04:42 AM.

  8. #128
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    Hey Rohrer,
    I think if this whole issue of mine comes down to showing that structural 'element' of lordosis in thoracic kyphosis then I can at least show this all day long.
    Proving that I understand the rest of the state of altered biomechanics my spinal column is in might be a more difficult proposition though.

    I've told you all that I don't have any genetic predisposition to AIS, which is true as far as I know and I do have a good understanding of my family history both from my parents and relatives, and ancestry.com
    Though I've said that I don't have a genetic predisposition to AIS doesn't mean I don't have AIS in my family.
    My stepmum Christine and her sister Marcia, both had AIS as kids, as did their cousins my Aunty Jackie and Aunty Lucy, and maybe other family members as well.
    Marcia works as a nurse in a hospital in the city and was over at my place visiting her brothers (my housemates) yesterday.
    I'm not sure if any were braced as kids or not.

    So as well as going and getting my next set of xrays, I'm going to go see my stepmum.
    It would be weird for me to ask her if I could have a good look at her scoliosis, but maybe not so weird if I ask her to look at mine.

    My family know I've got scoliosis, but its not something that I generally talk to about with any of them.
    I don't like to whinge and complain or even talk about my health issues within my family and friends, I play it all down.
    If they bring it up I usually acknowledge it and then change the subject.

    I'm going to talk to my stepmum and see what her level of knowledge about the spine is, I've never really talked to her about her scoliosis.
    I'm going to see if she understands about the spines natural curves and whether she can can maybe take a look at my spine and if she can identify that 'element' of lordosis I can feel in the thoracic region.
    I'm also going to ask her if she will join this site and relate her findings of looking at my spine and maybe share some of her family story about scoliosis.

    I don't usually ask my family for anything, but I think its time I did.
    Maybe this situation will turn more in my favor if I can have someone who knows me from a child and helped raised me for several years as a teenager and someone who herself had AIS and has a real family predisposition to AIS will look at my spine and vouch for me.

    I think I can show that element of lordosis in kyphosis any day of the week.
    My dad and stepmum live about an hours drive away though.

    I told you all I wanted to work out some kind of a plan, but I hadn't figured it out yet... this might be a start.

    Oh yeah, do you see what I mean by a vector set now?
    What am I supposed to call that?
    Also I don't know if you guys notice but I frequently use the word 'structural' to mean something other than the scoliosis terminology implies.
    A lot of times when I say 'structural' I'm referring to 'altered biomechanics', and not a scoliosis patient who's curves are able to bend out.
    How do I get around that confusing terminology issue?
    Last edited by sjmcphee; 02-05-2016 at 05:20 AM.

  9. #129
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    Quote Originally Posted by burdle View Post
    Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
    I thought the site was for support?
    Well I can't answer for Linda but I think there is a duty to challenge incorrect and confusing information for the sake of other people. Though that is a positive thing (criticizing bad ideas) in scientific circles, it is often viewed as negative in lay circles which this forum is. It is simply not rational for lay people to dream up stuff and then get mad when it is correctly criticized. But there are 8 million instances of it, especially in the research section.

    In the research section, there is enough pseudoscience, folk science, and sheer nonsense to choke 5,000 elephants. That isn't helping anyone except the few players who post it. It shouldn't stand and I try to provide pushback.

    I have long thought that SSo focuses on support more than science. The lovely Tonibunny, a moderator there, knew more science than most other players. But it wasn't as front as center as much of the time as it is here. When people on NSF state they don't want to hear about science and just want support I have often suggested they try SSo. Here on NSF, though support is a goal, the moderation favors science and supports the criticism of bad, incorrect ideas stated by lay people.
    Last edited by Pooka1; 02-05-2016 at 07:40 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. #130
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    Sometimes I just write what I'm thinking..

    Right now I want to talk about the 'altered biomechanics' I've tried so hard to describe for so long and I'm wondering whether anyone actually has a level of serious deep thought to try to envisage the logic in everything that I've tried to say.
    I'm wondering, does anyone actually get it?

    Think about it, think really hard.
    Try and imagine in your mind that there is a tiny little element of lordosis in kyphosis, a tiny little concave and convex systematically changing... concave on top of convex becoming convex on concave and back again, like in that 3d image.

    Now think about those vectors (sorry Rohrer)
    All the instability occurs within the boundaries of these constraints.
    The angle from each line to the next is equal.
    If you combine all those vector sets together, 4 sets of 4, and just like I tried to explain, in the context of the spines natural movements, then each region with its own midline vector.
    You have a system where every every junction has a relationship to every other junction, because it has a piece of it.

    The load at each junction only 'sits' or locked one side of the concave / convex equation, so two of the vector sets are primary, (what the load sits on) and 2 are secondary - constraints of the system.

    (4 lines, 4 sets of lines 4 junctions, 4 regions)
    2 of the junctions are at the junctions of the spines natural curves, one divides central thoracic, the other is a geometric equivalent to balance the equation.

    Imagine one of those straight line vectors with one of those angulated vectors at every junction.
    You always get a concave on top of a convex, or convex on top of a concave within these constraints, because there's a measure of axial rotation locked in at those junctions.

    The system is compression/tension + lateral flexion to create a small spinal adjustment with the result being a measure of axial rotation.
    Think about that different angle I showed from that the top view.
    Also every time there is a junction, its going to be occurring with the constraints of those vectors.
    Think of the loading on those junctions systematically changing (concaves on top of convexes changing to become convexes on top of concaves) but sequencing as a group somewhat similar to the firing order on a 4ylinder car, like 1, 3, 4, 2, for example.. (not saying that particular order is right for scoliosis though, its just an example).
    But you combine or visualize the idea of that 'sequencing' as 'driving' the region to region 'system of instability' in a broken system, (4 regions -thoracic being divided by the lordosis) with the idea of deep connective tissue arising from transverse process to spinous process 6 vertebrae above and below.

    Can any of you at all visualize it?
    Instability, following a path, geometrically and anatomically perfect, the system is sound.
    Do any of you actually appreciate both the logic, complexity, and implied mathematical certainty to what I'm suggesting I've witnessed??
    Or are you all just completely unable to grasp it?
    Last edited by sjmcphee; 02-05-2016 at 07:07 PM.

  11. #131
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    Quote Originally Posted by burdle View Post
    Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
    I thought the site was for support?
    Some people are here for support, others are here for good information. Those two can occasionally conflict.
    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

  12. #132
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    Pooka,
    I think you need a little bit of humility and need to learn the lesson that the ends don't always justify the means.
    Back in the early day when this story all began for me the internet was much more primitive.
    We'd all talk to one another through the use yahoo groups mailing lists.
    Linda Racine was there always responding to people and talking with a level of authority.
    After I came to this site, I saw that she was somewhat a person of authority within patient groups etc.

    Back then I was still coming to grips with what had happened with my scoliosis, though I know you all doubt that story.
    I was at some level frantic to do something about what I saw unfolding in my spinal column.
    I thought because I could see a system of instability within my scoliosis and that because I could understand scoliosis biomechanics I could cure everyone.

    So I had this attitude, "If you are not part of the solution, by default you are essentially part of the problem"
    And I had this gung-ho attitude, that the "ends justified the means".

    I felt justified in abusing anyone, and accuse them of being part of the problem, if I didn't get my way.
    I didn't get very far and got a taste of my own humility.

    The point I'm making is lets say I'm right about my scoliosis, and that hypothetically I'm was right about being able to cure everyone else (which I'm not convinced I am) though I know I'm right about mine.
    Would I be justified in treating Linda Racine or Tressa Goulding of the SRS or SRS Presidents or SRS Research Directors or researchers rudely or disrespectfully like I have done in the past?

    Standing up their on the scoliosis podium with my trophy or award for recognition for my valuable service to scoliosis.

    Would I feel good about myself in the way I treated people?
    Would I be justified it the way I acted?

    The answer is no, there's no excuse for bad behavior.
    'The ends don't justify the means'.

    Now I think the problem is a little bit of the NSF's own making because they have a forum that attempts to combine information and support together and you really need to try to separate them, like I've tried to do on my demo site.
    If you separate the 'information area' from the 'support area' then you alleviate most of the problems, and you will also make the job of moderators much easier.
    (Sooner or later you're going to have to deal with it)
    But I respect and appreciate that you're all only trying to do the best you can here, with what you have.

    People come here for both information and support, and you have to use your judgement carefully.
    Firstly you stated 'I think there is a duty to challenge incorrect and confusing information for the sake of other people.'
    I want to question your terminology and therefore you're thinking.
    You said 'duty to challenge'.
    Why 'Challenge'?
    This implies that YOU feel that its OK for you to have an 'End justifies the means' attitude, and to argue, be disrespectful and inflame tensions with others.

    Why not just state the facts and state your position?

    What you're actually arguing the merits of is that you have the right to offend, badger and treat others disrespectfully in the name of 'factual science'.
    Its a fine line you are walking on, in a patient support group, when you don't actually have the condition yourself.

    But as I said people do come here for both info and support and people who manage and post on this forum need to have good judgement.

    In the case of what is posted on the research forum, for the sake of the integrity of the information on that forum, I'd say there were valid reasons to challenge me, at least on some level when I posted there.
    Especially when I was making statements that may have given other patients false hope and expectations.
    But you are 100% out of line when you pull the same behavior on my own thread "My Adult Scoliosis Story"
    You have the right to state the facts as you know them, state your position of the issue, and if you don't have anything further constructive to add you keep your mouth shut.

    "It is simply not rational for lay people to dream up stuff and then get mad when it is correctly criticized."

    Again you CONTINUE TO INSULT ME ON MY THREAD you assume I'm wrong, but you don't KNOW I'm wrong.
    I'm not giving other patients false hope, I clearly state that I don't know if what happened to me occurs in other patients.
    I'm not hurting anyone and not posting in the research section.
    Should I be deprived of my right to tell my story as factually as I can?
    Do I deserve to feel continually hounded and badgered by some other member who doesn't even have scoliosis?
    Who implies [going from your comment in post #120] that I don't have the right to talk freely about what I think and feel simply because my scoliosis isn't as bad as your daughters scoliosis?

    I've tried to be patient with you and I try to be respectful to you Sharon but you are continually abrasive with your 'duty to challenge' attitude.
    Linda knows I can be extremely rude, blunt and abusive and that I wont hold back, but I've tried to learn the error of my ways.
    Also for the sake of the integrity of the forum I do try to be respectful.
    I've told you that its not in my nature so much to get upset and emotional and my real nature is to get mad.
    And if you continually keep pushing me into a corner I will eventually lash out.
    Not only will I lash out I'll do so in a manner that likely gets me banned, and as much as I don't want to get banned, I wont be sorry for what gets said.
    And also you are taking up all my attention when I would actually like to talk to some of the others here about their contributions to my thread.

    So let me put it this way and let it be crystal clear:
    It would be much easier to say something short and sweet using expletives than to spend my time trying to explain how things work the nice way.
    It's really much easier for me to be short and blunt.

    Also why is it 'YOUR duty to challenge'?
    I cant see that you are a moderator on your tag or a person who speaks for authority for this site.
    So why is it YOUR duty to challenge incorrect and confusing information for the sake of other people?
    Why is it YOUR duty to argue, be disrespectful and inflame tensions with others?
    If science is your angle why aren't you moderating at scoliosisjournal.com instead?
    Just asking...

    You state "It shouldn't stand and I try to provide pushback."
    Don't try to justify your behavior on this thread, I'm not posting in the research section.

    Also as for science, do I seem like a person who hasn't taken every single aspect of the spinal column and its functions into account in my statements?
    When I say I know how my scoliosis works have I not shown enough valid arguments that whether believed or not my statements logically match my claims?
    I'm not some low level moron who has no idea what I'm talking about despite your continued insinuations.

    Also you state "Here on NSF, though support is a goal, the moderation favors science and supports the criticism of bad, incorrect ideas stated by lay people."
    Criticism of bad ideas may be the norm is scientific circles, but there's a missing factor between them and people in a support group and that it that people in a support group are more emotionally involved in the topics than people who are just scientists.
    So 'criticizing' is not necessary a term that should be considered correct in a support group.
    Again state the facts as you know them, state your position or arguments on the topic if you have something positive or constructive to add and then if you have nothing else to say then keep your mouth shut.

    It is NOT YOUR DUTY to offend, badger and treat others disrespectfully in the name of 'factual science', in a patient support group especially if you don't have the condition yourself, whether your kids do or not.

    Learn the lesson Sharon, fail to and the next time you insult me on my own thread I won't be so nice about it.
    Last edited by sjmcphee; 02-05-2016 at 10:56 PM.

  13. #133
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    Quote Originally Posted by rohrer01 View Post
    That sounds like a lower neck injury. (bold mine)
    Yes I would agree it seems to look that way from the symptoms.

    Quote Originally Posted by rohrer01 View Post
    I have neck problems and similar symptoms.
    I think I looked at your xray once before, I don't know how some of you guys cope with the curves you have.
    Its really hard for me to fathom. I hope you're doing alright.
    I feel bad that I seem to make it all about me and don't get as much time to spend looking at other peoples situations and take more of an interest.
    I always get caught up defending myself from the way Sharon rubs me the wrong way.


    Quote Originally Posted by rohrer01 View Post
    Your injury sounds like soft tissue swelling that began to take place immediately. This DOES alter your normal operation of the spine.
    Yes but it should go back to normal right? Not induce a whole changed system that engulfs the entire spinal column?

    Quote Originally Posted by rohrer01 View Post
    It's so sad that this makes you feel frantic. That in and of itself can make your symptoms feel worse. I hope you don't still feel frantic and have learned to live with your very small curves.
    Yes I have learned to live with it, but its hard not get wound up over it, when I can feel it slowly but surely getting worse.
    Thanks for caring and showing compassion.

    Quote Originally Posted by rohrer01 View Post
    If you had the knowledge to fix it, why didn't you? You admitted staying home from work playing video games while off work. This isn't going to help the swelling or help fix your spine. Yet you obsess over it...??? It confuses me that you claim to have all this knowledge, which we established is false according to your explanation, and did everything counterproductive to help yourself including trying to argue with researchers that had already researched your ideas. This made you more frustrated, and I might say angry that you felt/feel that no one is listening or taking you seriously. We are. But you have to be open minded enough to admit to the facts. You have no proof that your scoliosis wasn't already present. It was a secondary finding.
    You don't frustrate me in the same way Sharon does.
    1. The only way to 'fix it' was to reverse the bad loading back to the original injury through traction (if that's even possible) and then realign the original thing that went wrong.
    2. Yes it does seem contradictory, I was in fact 'wrapping my spine in cotton wool' and not doing anything that I thought would aggravate the underlying bad loading... So that I could focus on understanding what was going wrong.
    My lack of physio and exercise, and admittance to sitting around playing video games does seem to suggest I was being negligent, and maybe your right.
    That said I've never been sure that physio was really beneficial to me (Kevin_Mc also indicated this) I feel that even though strengthening the muscles is beneficial to having a healthy spine, strengthening the muscles whilst the loading is compromised only aggravates the system. I'm not sure if this is different for different people or because my scoliosis may be different to others.
    Its never been established that I'm wrong about my scoliosis, in my opinion and I've not seen any research that resembles mine in any way that would give me reason to think they truly have investigated this area of interest thoroughly.
    I think Dingo once mentioned Dr Keister, and I contacted him.
    He's really good to talk to because he will give you the time of day, not like some others, and he seems to have a passion for scoliosis research, doing his tethering and models.
    He said he doesn't think I'm a liar, but that he thinks my scoliosis is different to AIS. He didn't seem to dispute my claims in any way but its sometimes hard to discuss these things with different terminology.
    He said AIS patients have "out of balance" at around 40 degrees where Adult Scoliosis patients it occurs at around 10 degrees.
    I'm not completely sure however that I understand what he meant, or if he completely understood me.
    The thing I feel going wrong in my spine doesn't seem to show any evidence of itself in xrays, which makes me more intrigued to find out just exactly what it is.
    I do think my scoliosis was already present prior to the injury, but at just 12 degrees I tend to refer to that part of the development of a spinal curvature mode.

    Quote Originally Posted by rohrer01 View Post
    When I look at your coronal x-rays, I can see your spinous processes almost dead center throughout your curve. My daughter has a curve of similar magnitude as you and NO rib hump. This means there is very little or no rotation at all. The curve just isn't large enough, or that type of curve. Some people with smallish curves will have HUGE rotation and very little lateral curve. My DIL was that way and had to have surgery. She literally was having what looked like the crankshaft effect with no hardware so she ended up needing fusion for a curve under 50o. She was 48o laterally.
    Yes I'd agree with that on those xrays, but it has been slowly getting worse over time.
    I can feel that its gotten worse in a way I cant easily explain and think I'm getting closer to rotation, or at least it feels like it.
    What is the 'crankshaft' effect?

    I know you don't believe that my injury initiated a 'system of instability' and 'altered biomechanics' but at least you aren't disrespectful about it.
    I'm not completely sure whats going wrong in there, but I absolutely and most definitely see a system of bad loading as a result of that injury, and I do see that a 'lordotic' components exists locked into the centre of my thoracic region.

    Quote Originally Posted by rohrer01 View Post
    What's missing is the logic of what really happened to you. You won't accept rational explanations and insist your case is unique. In a way it is. We are ALL unique. If you really think you have come upon this great break-through, then you have to figure out a way to explain it. The researchers are well aware, as most of us are, that we have altered biomechanics. Since your spine is so "level", referring to your spinous processes, you seem to have less altered biomechanics than most of us. Are you limited in your range of motion? Are there things that you can't do because of your curvature and altered biomechanics? I'm not being snarky or mean. I really do want to know if this limits you in any way.
    Its not that I won't accept rational explanations, its that my spinal column is telling me something different.
    Until those two things correlate I have to firstly stand firm on what my body itself showed me was going on.

    No I cant say I'm limited in range of motion in anyway, but it does give me some level of discomfort, sometimes pain but that just depends on what day it is..
    However if I over exert myself in the way I use my range of motion 'pushing myself or stretching those muscles' it does lead to considerable more discomfort.
    I'll usually feel it a lot more the following day, and if I end up consistently doing too much day after day my body doesn't take long before it starts feeling totally burned out.
    Then I am stiff and sore.
    Last edited by sjmcphee; 02-06-2016 at 10:20 AM.

  14. #134
    Join Date
    Oct 2003
    Location
    Brisbane, Australia
    Posts
    147
    Quote Originally Posted by rohrer01 View Post
    I also had a work injury where I felt more like a crinkle in my lower spine. Afterward, not only did my lower back hurt, but my upper back started hurting worse than it had before. It was so much that I sought medical attention and was seen by a scoli specialist. The work injury affected my L5/S1, which the surgeon didn't even look at. My upper curve had progressed a little, but I do NOT believe it was a result of hurting my lower spine. My upper curves were stable for a good ten years after that. My lower back has continued to degenerate.

    I blame the upper back pain on holding myself differently to compensate for the lower injury. That's what we do. It's not a conscious thing, usually. We change the way we sit, stand, walk, and do just about everything else when we are injured. That doesn't mean that we've started a system of altered biomechanics that lasts a lifetime. We heal and get back to normal. I just happen to have a deformed L5 and my neurologist said that the Spina Bifida Occulta (that's what it's called) CAN be painful. I never completely healed as the injury caused a bulging disc which was the start of DDD, and continued to have intermittent pain in both the lower and upper spine. I was 29 when my "injury" happened. However, I chose not to dwell on it and I have had many years of a very active lifestyle despite a lot of intermittent pain (I've had since a kid) that gets worse as I get older. Now I'm in my 40's and unfortunately, people in their 30's and 40's start to develop spinal degeneration. Some hold out longer, some don't, as in the case of my ex who was disabled from DDD in his thirties. I have DDD in my L5/S1 and it HURTS! MY scoliosis HURTS. I'm a rarity as I've heard that most people don't have as much pain as I do from scoliosis. But, I have some sort of neuromuscular disease which likely contributes a lot to that pain.

    My scoliosis doesn't fit a particular pattern. I've yet to meet a doctor that has seen a curve like mine. YOURS fits a typical right thoracolumbar curve. You can see the curve all the way to your pelvis. That's why I interpret it that way, even though you disagreed in my previous post.

    You may be one of the unfortunate ones who have degeneration. Ask your doctor if he sees any degenerative changes. IF he tells you he sees nothing out of the ordinary for someone "your age", then that means there ARE changes going on. That has nothing to do with your original scoliosis, except it may degenerate from age WAY later on. Likely never to surgery unless you have a lot of degeneration.
    Your ordeal makes mine look like a walk in the park... Though I don't really know what state it will be in in another 20 years or so and that concerns me (if I make it that far).
    I don't know why the doctor never looked at the area from where your injury occurred, and its unfair that it lead to such worse changes as a result.
    That pain in your L5/S1 seems like a nasty place to get pain too, its almost making me cringe.
    What neuromuscular disease do you have if you don't mind me being curious?
    And I do think I've heard the 'someone my age' speech, I think I am starting to have the beginnings of degeneration.

    Quote Originally Posted by rohrer01 View Post
    No you weren't wrong to try and get questions answered. That's why we're here, for answers and support.
    I think the part you feel you are missing is the support. I think you don't feel supported or validated. I'm sorry for that. But those of us that try to give you reasonable explanations for what you are feeling are trying to support and validate you. But you are very stubborn, as you know.
    Yes maybe, and I appreciate you saying it, but I'm well aware of the position I've gotten myself in.
    Sometimes I just don't deal with it very well.
    I know I come across as being somewhat stubborn and opinionated.
    But it's not stubbornness just for the sake of stubbornness.
    I do believe I witnessed a system of bad loading in my spinal column (Linda knows me well enough when she says nothing anybody says will change my mind) and I wont be truly satisfied until what I've witnessed occurring in my spinal column correlates with the information given in regards to it.
    Quote Originally Posted by rohrer01 View Post
    You have to remember that we ARE taking the time to read your posts and your ideas. Isn't that validation. How would you feel if no one ever commented on your threads? It takes a LOT of time to respond to your lengthy posts and we are giving you that validation and support by doing so. I hope you understand that.
    Yes you're right, and I do appreciate the time you and thought you all put into your comments..
    I didn't think anyone was listening at first because no-one replied...
    I assumed no-one knew how to take me... but that's something I've gotten used to over the years..

    Quote Originally Posted by rohrer01 View Post
    You are a real scoliosis patient. However, you obsess way more about it than most. That's not going to be good for your psyche. It will give you a disability complex where you may limit yourself. My advice is to live life and not to obsess so much over this. Keep track of it but don't dwell on it. Think of those two boys from Canada who had 120o+ curves and count your blessings.
    Thanks for saying that...
    Its something I'm touchy about because when I first was diagnosed and came home from Melbourne my mum took me up to a specialist in a public hospital in the city.
    As you would understand, the guy doesn't look at my work injury but slaps the xray up on the light and says with my mum right there "You don't have scoliosis" and made me look and feel like a complete liar and an idiot.
    Being made to feel like I'm a liar has always been a touchy subject ever since.
    The fact that I do obsess way more than most people with my size curves actually tends to reaffirm that something is different about my scoliosis than others.

    I received a email reply back from my stepmum earlier and shes willing to have a look at my back and share any findings on this site and share her scoliosis family story which is what I asked.
    The reply was "No problems", so we'll see what happens.

    Sorry for the slow reply to my comments Rohrer and thanks for your thoughts.
    I'm trying to catch up with all the others who gave their time to comment as well.

    I don't get angry with others simply because they don't believe me, I'm not irrational (I bet some of you guys question that.. Lol) and I learn from it either way - (I'm a slow learner) it just depends on how those people go about it expressing their opinion that either inspires or motivates me or backs me into a corner. Sometimes though pushing me into a corner will motivate me as you saw with me doing that modelling the other day, but mostly it just infuriates me.
    Last edited by sjmcphee; 02-06-2016 at 02:11 AM.

  15. #135
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,295
    Quote Originally Posted by LindaRacine View Post
    Some people are here for support, others are here for good information. Those two can occasionally conflict.
    Yes luckily it is only occasionally.

    Until I joined this group, I had never seen lay people wax so much as if they were experts in any field. There are (or were at this point) people who thought they could do a five minute search on google and "solve" AIS.

    It's breath-taking. To read what these people write would make you wonder why we have medical schools and grad schools. Who needs those when we have google? People don't know what they don't know.
    Last edited by Pooka1; 02-06-2016 at 07:12 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."

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