Been reading up on this disorder called, "Arnold Chiari Syndrome" Read On

Discussion in 'Your Living Room' started by Henrysullivan, Feb 23, 2007.

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  1. GinaMc

    GinaMc Me and my friend Sally :)

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    MedievalWriter... the board is moderated but I don't know how often. As far as a "ignore user" button would go.. I don't think that is necessary.. the one thing Hank did say is that if you don't want to read something then don't left click on it... and my point was that I did read it because the title caught my attention and when I read it I didn't like what he had to say... was offensive ...and i said something... but in the future if he or anyone else posts a thread that is something that I may not be interested in then I just don't read it... simple as that. but thank you for the input.

    take care.
    Gina
     
  2. Mnme

    Mnme Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Hank, I learned from this forum years back that if you have a good idea and push it too hard, you can actually create the exact opposite to what you want. It's due to the fact that the more people push, the more some will resist. The resistance in this thread is growing. Can't you feel it? That was why I suggested deleting (not editing) this particular thread (you have other threads to share info). Chiari involves the brain itself, so it is only natural that people will defend this. It's like playing with fire.

    Many here have been exploring the NUCCA approach for quite some time. So there's a lot of info you can tap into as well as sharing. There is always a right time, place and approach ... I learnt that the hard way.

    Lee
     
  3. NurseMom

    NurseMom New Member

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

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  4. Amethyst

    Amethyst She believed she could, so she did.

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    DITTO

    Hank, I'm one who shies away from confrontation whenever possible. I rather see the good in people than point out their faults...but I can't stay quiet on this topic, it needs to be said. You are an obviously caring and supportive husband for your wife Winde and I'm sure it helps her tremendously. I like that you are so passionate, I think it's great that you're dedicated to sharing your knowledge of upper cervical chiro, however, cramming it down our throats at every little opportunity is getting old. Your arrogance is really starting to show. (Yes, I did unfortunately read your original unedited post for this thread). I had thought that you were finally toning down your approach over the past month or so but I can see by this thread that you really haven't changed much at all. I hope you will soon. You have a lot of good information to share but it's getting rather tainted by all the arrogance and single-mindedness your displaying. I'd hate to see that continue. As Lee (mmne) but so well, "there is always a right time, place and approach."

    Amethyst
     
  5. Amethyst

    Amethyst She believed she could, so she did.

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Edit: double-post
     
  6. nassman

    nassman Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version


    Ok, here is a question for you.

    Let's suppose a person on this site with terrible vertigo, tinnitus, and hearing loss who is desperate for answers and some relief from their symptoms takes what you write to heart and decides to see an upper cervical chiropractor.

    Now, let's suppose that this person has a bad experience and the work that the chiropractor does actually causes their symptoms to get worse and more chronic (something which you and I know is a possibility). Will you take responsibility for this person's pain? After all, you push NUCCA work so heavily, you are bound to affect the decision making process of newbies or some of the more the desperate members.

    Now, what if this person enters into a depression and fear. They may become mentally unstable and, God forbid, commit suicide. Will you take responsibilty for this too? This may be a bit far-fetched, but what you are not considering is the desperate state that many people with this condition are in. At some point after months or years of chronic symptoms, they are willing to try anything. Well, just as everyone here always states that certain drugs, the meniette, herbal supplements, foods, etc. will help different people in different manners, so will NUCCA chiropractic work. Unless you are willing to take personal responsibility for things that CAN GO WRONG with NUCCA treatments, you need to stop selling it as the "end-all, be-all" cure for meniere's disease.
     
  7. nassman

    nassman Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Bumped.

    Still awaiting answers to important questions.
     
  8. sotko

    sotko New Member

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Nassman
    I think he is away at the moment, going to see a Doc in Chicago, so he may not reply for a while.

    You make valid points though, but the same questions could be asked of doctors referring a treatment and even taking the John of Ohio regimen. I am not saying either of those are bad, but saying that there are risks in anything we do. Injections through the ear can cause sysmptoms to flair. I had an ECOG done, doc said it wouldn't hurt, but fark it hurt. Alot. People need to research, and make up their own minds on what treatment to get.

    I am in no way defending what he said about Chiari, cause it was crude and really upset alot of people on here, but i will not say anything bad regarding his push for getting some Upper Cervical Work done. Yeah, he jumps into alot of threads, but there is nothing wrong with that, is there?? He is only excited about what worked for him, and trying to get his point to people to perhaps try it.

    Dr Burcon tried that a while back, and he got flamed, big time. He didn't last long, which was a great shame that he wasn't given a chance. Hank is persisting, regardless of the negativity he is getting.

    I hope he continues to post, as i find what he has to say interesting, just as i find what others have to say on here interesting.

    Cheers
     
  9. Henrysullivan

    Henrysullivan New Member

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Hi Nassman,

    Just south of Louiville this morning. Sun's coming up, looks like a beautiful day. But it is raining somewhere and I know that others are not experiencing a beautiful day. That means my good experience may or may not be shared by others. Yet, I'm telling you and everyone out there reading this that where I am it is beautiful. There maybe someone out there affected postively by my statements and the way I portray them, even though it may be raining and ugly where he or she is. That is very much what I hope to do here, affect people positively who are afflicted by something that I have experienced intimately and have, mainly through my own powers of reason and deduction, been able to effect postively in my own life. You may not agree with my methods. On occasion I will find it my nature to push the envelope. That is calculated on my part because many times anything short yields few results.

    For quite a while before I got here, folks have been on this site writing about their daily experiences with MM, their bad days and good days, what they have tried, the results. There is much empathy on this site. I admire that and empathise with folks as much as anyone. But empathy is not a primary goal of mine. I would like to see people to take action, to fight this thing with every fibre. That is just me. That is why Winde and I are half way to Chicago to see Dr. Dickholtz. We have no guarantees, and this may not work. We may find ourselves disheartened; but yet with the experiences we have had in the past what we are doing makes sense. That is what I have encouraged folks to do here, do things that make sense. Do not do things that do not make sense. I have written that verbatim. If what I write makes no sense to you, do not do it. If it makes half-way sense, but you are left with questions, ask them. As you may have noticed, I am glad to throw in my 2 cents when I have pennies to throw. Contrary to your perception, I do not post on many topics, just the ones that have a direct connection to my experience.

    Now, let's talk about responsibility. I take responsibility for crossing the line that many on this thread indicated to me that I crossed. I have publically apologized. I apologized for the manner I made my point, not for making it. I believe that this diagnosis is an important topic to discuss, from all sides. Now, I ask you, what else can I do here? What else would you want from me?

    On the subject of taking reponsibilty, I find in certain aspects that you and I, Nassman, are simply opposite sides of the same coin. Here is a reference I pulled from one of your earlier posts. Regarding Meniere's you wrote:

    "Well, although I have read this report in prior years, I clicked on the link anyway.
    "The first glaring error I see is the title: MENIERE'S IS CURABLE. Ummmmm, no. It is not curable."

    Are you sure? It certainly is in my case, in Pardonme's and many others. Since we're kind of playing "What if?" Let me play that with you. What if someone who happens to have my flavor of Meniere's, a flavor that is in fact curable to a large degree, reads your statement and being in despair already, gives up all hope. What if that person, who if they happened to venture into the right chiropractor's office would find relief, instead committed suicide largely based upon the very last entry he or she read on this site, that being yours? What if the very next entry he or she would have read was mine, but he or she, out of complete despair, just shut down the computer? Would you take responsibilty for that person's demise?

    Now, let me answer both questions, your's and mine. At this point I can only do so at the risk of repeating; but here goes. You, I, everyone else are our own best doctors. Everyone else is just a consultant. That is not a saying; that is not a mantra or slogan. That is a truth, a practical truth of life. Each of us is in charge of ourselves. What we do that is positive, affects us positively. What we do that is negative, affects us negatively. What I encourage folks to do is to take positive steps to enjoy better health. I encourage folks to look at all the possibilities, not just what I say. I encourage folks to listen to their doctors. I do not encourage folks to blindly follow the advice of an MD if that advice involves invasive surgery. That point of view is born of my experience. A doctor performing an unnecessary invasive procedure on someone is a nightmare, as my wife can attest. So if everyone is fully responsible for themselves, including their own choices of health care, all the bases are covered. In fact, neither you nor I own sufficient authority to be responsible for another's health care decisions. And because we have no authority for their decisions, we also have no responsibilty for them. You cannot possess responsibility without possessing authority.

    Now, there are other items posted on this thread for which I have given no response. Okay, some people may think I'm arrogant. That is for them to think. On that, there's really nothing for me to respond. What should I say, no I'm not? So on this thread, I am still glad to hear from all of you; but let's turn this toward the positive and away from the negative. Let's talk about getting better and what it might take to get there. I have no plans to go anywhere else. I suppose you do not either. So we're kind of stuck with one another. I do not attack. However, if attacked, as you may have noticed I am a good defender. So why don't we just not go there? Attacks role down by back in any event. You cannot break my spirit.

    In my life I cannot remember an event after which good did not spring from bad. That is my experience; perhaps you have a different one. But giving me the benfit of the doubt, why don't we take this opportunity to see if that principle might also rule in this case.

    Let's get back to the subject at hand.

    Love to all, respect for all,

    Hank

    Now, it's off to Chi-town!
     
  10. charisse

    charisse Been hanging here for 8 years

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Hank,

    Good luck with your visit in Chicago, I use to live there till I moved to Ga.
     
  11. Mnme

    Mnme Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Sun's up here too Hank and it's a beautiful day.

    I'm sure there are a lot like me whose solitary purpose for finding this forum was to find my own answers. It was years ago now. I didn't want support... just potential solutions. I wasn't interested one little bit about who came up with them... Doctors, Chiropractors, Fellow sufferers... didn't matter. It also didn't matter whether there was a study on it or not.. just so long as it worked. I was too sick back then to find any more fun in life, stuck in bed, so I had no choice. My young children were growing up outside of my bedroom and I was unable to be a part of it. So I fought hard. I cringe to think what I would be like now if I hadn't had such a focused approach .... I could not keep food down, would catch sleep between vertigo attacks, and barely had the energy to leave my bedroom.

    The thing is, I did find my answers. Not just a little, I'm talking complete resolution of all my symptoms. But you never find them listening to people who talk down ideas... you find them from seeking success stories. And so I didn't find my answers on this fourm, cause back then, any idea that did not come from a Doctor was under very strong attack. Fortunately, things have changed as people are realising that is not where the answers currently lie. A real shame that I suspect will slowly change as the groundswell grows.

    That's good that you edited your initial post as in your enthusiasm you definatey went overboard. Not many are able to swallow their pride ... so well done with that. So I suspect you are the type who will stay. That is good, as these positive stories are spreading... and so they should.

    Unfortunately, you need single minded determination to beat this condition, as you have to reject what pretty well everyone tells you. So I strongly suspect at this stage, that anyone who is put off by a few rough comments won't even come close.

    Hope your visit goes well. All the best to your wife.

    Lee
     
  12. pardonme

    pardonme Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    .
     
  13. Amethyst

    Amethyst She believed she could, so she did.

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Single minded? No thank you. I'd much rather be focused on my objective of being well. To be single-minded I'd be missing out on a lot of useful information. I want to be open to as many ideas as possible.....from John of Ohio's regime, to gluten free, to NUCCA. I'd hate to be so single-minded that I missed the right combination for my particular case.

    I may be put off by some of the comments but I won't ever lose my focus.

    Amethyst
     
  14. Mnme

    Mnme Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    Amethyst, your post is puzzling me ... Isn't "You have to be single minded to beat this condition" the same only more intense than "focused on being well"? Also when I wrote "You have to reject what pretty well everyone tells you", it was supposed to mean rejecting the way Doctors claim Menieres is unresolvable. These phrases were not meant to be stand alone comments but rather read within the context of the rest of my post where I mentioned I resolved all my symptoms. I guess syntax isn't my strong point.

    Your comment about Nucca and gluten free are ironic as I've been trying to spread the word on these to help others for years now. I may not get my words exactly right, but you'd be hard pressed to find someone who has searched as broadly or fought harder on the 'objective of being well'.

    Lee
     
  15. MedievalWriter

    MedievalWriter Ryan's Rose Pvt Ryan Winslow KIA Iraq 4-2006

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Ver

    'Single-minded' and 'closed-minded'--

    Single-minded pursuit of health is laudable in those of us who need health.

    Closed-minded refusal to consider reasonable treatments may slow progress.

    Is the difference between these two what we're sorting out here? Or have I missed it entirely?

    Its entirely possible that I've missed the point entirely! Of course, the point isn't really 'entirely' its 'mindedness'--oh never mind! :D
     
  16. Mnme

    Mnme Guest

    Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

    LOL you didn't miss it at all. I am proud that I was single minded in my search for health. Thanks MedievalWriter. :)

    Lee
     
  17. Henrysullivan

    Henrysullivan New Member

    Hello All,

    I will have much more on our visit to Dr. Dickholtz' office yesterday at the Dickholtz thread. I am sorry that I won't have time to begin it until later this evening and it may take a little time to write. Today Winde and I plan to go to Springfield to see the home of one of biggest hero's, that of Abraham Lincoln. But I will tell you this, our time with Dr. Dickholtz was a great, I repeat great experience. So as time permits, I want to add a couple of comments here.

    Someone earlier this week suggested that I ask Dr. Dickholtz his take on Arnold Chiari, which I did. I want to report on that now. Please keep in mind, Dr. Marshall Dickholtz is 84 years old; although he looks and acts no more than 60. Dr. Dickholtz was the founding director of NUCCA. He has been practicing upper cervical chiropractic for over 50 years. Over those years he has examined and adjusted thousands of patients, many thousands. Here is his take on Arnold Chiari: According to Dr. Dickholtz, Arnold Chiari, as medical science describes it, is a very serious condition, one that is extremely difficult to diagnose and one for which serious surgery is often the prescribed medical treatment. In the next breath he said that if someone diagnosed with Arnold Chiari walked into his office, he would look at his or her case just like anyone else's. He said that he would do his tests and X-rays (very special tests and X-rays that I will describe to you in detail very soon). If his examination returned a conclusion that the Atlas required adjustment, he would adjust it just like anyone else who walked into his office. He said that anything that he would do to the patient would be so far less severe than invasive surgery that it would make perfect sense to him to try. He said that he believes that one should always try the non-invasive first . If the non-invasive does not work, then one would still free to look at medical options. He said that over the years he may have treated many folks who had what someone in medical science might very well have called Arnold Chiari, but who at the time had not been officially diagnosed.

    Now keep in mind, Marshall Dickholtz is not your corner chiropractor. He does not twist the head or press on your back. What he does is so subtle that you really have no idea that he is finished.

    I have so much to add here, but unfortunatley I do not have the time just yet. I will get it posted as soon I can.

    Good health everyone,

    Hank
     
  18. Mnme

    Mnme Guest

    Thanks for checking that out about Chiari for me Hank. Much appreciated.

    Lee
     
  19. Amethyst

    Amethyst She believed she could, so she did.

    Lee, I guess in a way we are arguing (ok, maybe not arguing but disagreeing :-\) over semantics. I often have trouble in finding just the right term to describe my thoughts and that may be what has happened here. When I think of the term 'single-minded' I think of someone walking around with blinders on. To me, your statement "Unfortunately, you need single minded determination to beat this condition, as you have to reject what pretty well everyone tells you." illustrates that point. Perhaps I should have used the term close minded instead (in my response to Hank) but I didn't think the term quite fit. My plan is to be open minded to all possibilities. I feel that once a person starts narrowing their search they're missing out on a lot of great possibilities.

    I'm sorry if I accidentally took your statements out of context.

    Amethyst
     

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