Putting my money where my mouth is: NUCCA

Discussion in 'Your Living Room' started by Wino, Jun 27, 2010.

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  1. Henrysullivan

    Henrysullivan New Member

    Another thing that strikes me is that, if your neck is straight, like so many others here, you must have had a trauma a couple of decades ago. Necks take time to straighten, really a couple of decades, and also take time to redevelop whatever curvature thatcanbe reclaimed. That time frame jives with your onset of Meniere's symptoms. So any trauma 20 years ago?
     
  2. Wino

    Wino Resident Honey Badger

    You've made some very fair points, and I want to address them so as to clarify my methods here.

    First, I have been up front that this is not a controlled experiment. The fact is I wouldn't be seeking any treatment at all if I didn't have any active symptoms. So to that extent, I am going to try everything in my power to reduce/eliminate this fluctuating hearing loss and most hopefully prevent permanent damage. Therefore, my willingness to forego certain interventions for scientific purposes is going to be a natural barrier to a truly controlled experiment. I am sure that is something everyone can appreciate.

    The second factor to consider is that in the case of NUCCA, specifically, the theory ebhind it is that an architectural/structural abnormality in the spine is the CAUSE of the MM pathology. The other interventions I have undergone are directed at controlling symptoms, not causes (steroids for swelling, bioflavonoids for circulation, etc.), with the only exception being the L-lysine (to suppress herpetic activity). So far the L-lysine hasn't prevented this current flare-up, and so I would suggest that it would be too coincidental as the source of my "cure" if my symptoms were to suddenly disappear tomorrow in the middle of these other treatments.

    So, back to the NUCCA, the theory is that the correction of the improper architecture of the spine will reduce/eliminate the problem. In my mind, whether the normal curvature of the spine returns and proper posture is achieved is very easily measured. If those things occur without any change in symptoms, it makes the structural cause of my problems that much less likely.

    Furthermore, even if I achieve normal structure/architecture in the spine with a concommittant relief of symptoms, I wanted to document everything else that was going on simultaneously so that I won't have the revisionist tendency -- something we all do -- to forget everything else I was doing at the time and relate everything to NUCCA. That's not at all meant to discredit prior testimonials, but it's just an inherent problem in relying solely on people's memory of events as opposed to a real-time diary of every event going on.
     
  3. Wino

    Wino Resident Honey Badger

    I have had chronic tinnitus on the left since I burned out 12 or so years ago. It doesn't affect me much, other than I know it's there. On the right, I have had intermittent tinnitus that developed within the last 6 months. This has not been very persistent even in the midts of the flare-ups. When I get significant aural fullness -- or right after a dex injection or acupuncture session -- the tinnitus really acts up for a few hours. But it has not been a significant problem and there's no way to tell whether the adjustment has done anything to it. I had some tinnitus after the dex shot last night, but it was gone by the time I went to bed. Oddly, the left-sided tinnitus has been slightly louder this morning than usual.

    As for the head trauma, see my first post on page 2 where I addressed that issue.
     
  4. Henrysullivan

    Henrysullivan New Member

    You wrote, "We went through every possible instance of head and/or neck trauma that I might have suffered from birth through the present day," but did not say what those instances were. I hope you will tell us what you told him.
     
  5. nwspin

    nwspin New Member

    Henry,

    Wino listed those instances on page 2 as he stated.

    You need a bigger screen on your blackberry. ;)
     
  6. Henrysullivan

    Henrysullivan New Member

    Thanks, nwspin, you are correct on the Blackberry.

    I expect that the chiro will tell you that the straight neck began many, many years ago. I said 20 years. It might be more. And any of these incidents could have caused the straightening process to occur. It is a mistake to. Think that pain might be the only result of a whiplash incident. Pain is what people look for, and so if pain is not the result they think they are fine. But 20 years of changes have been going on here, straightening the neck and deteriorating the C6/7 disc. This history and the resulting alignment abnormalities are consistent with what I expect, and that is that this condition is likely responsible for the symptoms. Now 20 years have elapsed. But I expect that the good ear can be salvaged if the condition can begin to be reversed. I expect that if that happens, then you should stablize at or near your best present state of symptoms. And if by virtue of the condition improving, tissues can be repaired, who knows. So I am reasonably optimistic for you Wino. Time will tell.
     
  7. studio34

    studio34 Guest

    He is a very, very cordial, friendly and professional man. We sat in his office for a good 45 minutes just talking about my entire medical history and symptoms. I will say he has been more thorough in terms of spending time speaking to me than any medical doctor I have ever been to. We went through every possible instance of head and/or neck trauma that I might have suffered from birth through the present day. We spent ample time speaking about my burned out left ear, and about the newer symptoms on the right. I received a very informative lecture about NUCCA philosophy specifically, and chiro philosophy in general ...

    ... he had me fill out another extensive "review of systems" type of form that asked very specific questions about symptomatology in virtually every system of the body. When I finished out the form I was called into the exam room for another discussion with the doctor. The first thing that struck me is that he had my x-rays lined up very neatly on the view-box when I walked in. The x-rays were all marked up with his hand-written notes, the various cervical spine levels were clearly denoted and one of the x-rays had a series of measurements and calculations written on it documenting the doctor's findings regarding the degree of subluxation and the calculation of force he felt would be needed to correct it based on the numbers.

    Wino -- this is all quite interesting and illustrates clearly how alternative therapists use the model of spending lots of time with the patient to maximise the patient "experience". Bedside manner is top-notch, office procedures are excellent and, guess what? These are shown in studies to be the guts of successful alternative treatments. In fact, patients do not base their satisfaction on the treatment itself at all but on how they "feel" about the whole thing, what happened, the feeling of being cared for. Moreover, someone like a chiropractor or acupuncturist is never in the encumbered position of a medical doctor who practices real medicine in possibly having to deliver either very bad news (say things the patient doesn't want to hear) or give a treatment that might be hugely uncomfortable such as a dex injection. It's just adjustments for everything or acupuncture needles. All up, it's an emotionally satisfying experience. I know this first hand because when I first saw a chiro in 2004 over the dizziness he too made me feel "looked after". Nothing he did changed my condition but I felt better anyway for a short while until I got tired of paying for endless appointments.

    One of the things that goes down at chiropractic conferences is new and better ways to make the business model work better -- in other words, deliver a better patient experience. It's all part of the feel good approach and has a great deal to do with placebo effect.

    I know you're probably frothing at the mouth right now Hank reading this but that's what happens and that's why people feel better. It is what it is.

    Another thing that is interesting in all of this and that you have mentioned is that, even though you are not running a completely "controlled" experiment here, it would be easy to forget the nasty horrible dex injections etc but come to the conclusion months from now that it is NUCCA that makes you feel so much better and not those needles. I think we can all fall for this ... forgetting that other things –– things we would rather forget –– could be responsible for feeling better.

    Best ... Scott



    Scott
     
  8. corona

    corona New Member

    Do whatever it takes to feel better. Ultimately that is what matters the most.....getting relief.

    :)
     
  9. Henrysullivan

    Henrysullivan New Member

    Mouth Frother here,

    I am not going to take up space here to debate Scott's point, or lack thereof. Scott has already recently shown, that he cannot back up what he claims here, now preemptively assessing (how's that for being scientific) that any success Wino might achieve in this process would be due to a temporary acting dex injection, or placebo, rather than treating what might be the actual cause of his symptoms through NUCCA. Wino is not stupid. Wino will know whether any improvement he feels might be due to NUCCA, if he feels any improvement at all. If he no longer needs dex injections, that would be one valid indicator that NUCCA is working. I expect that another positive indicator would be whether Wino even continues the treatment to its conclusion, knowing that due to the length of time it took for his neck to get to this point, it could be a lengthy process. But because he is somewhat on the cusp of symptoms developing in his good ear, I expect that if this is the cause, some changes should begin to take place fairly quickly.

    So if Scott would like to continue to make this argument, that only he is capable of correctly deciding whether any particular treatment is valid, based upon his own criteria, he knows that Taximom and I are ready to go down that alley, again and again, in the previous thread. But let's not contaminate Wino's thread with that discussion. That discussion has already been had, and we all know the outcome.
     
  10. james

    james ''Everywhere I go there I am'' GS

    Scott and Hank please don't start up on this thread.

    Take it outside.
     
  11. Henrysullivan

    Henrysullivan New Member

    Absolutely.
     
  12. Taximom5

    Taximom5 New Member

    I'm just wondering why you would try NUCCA concurrent with dex injections. If you lose your hearing completely, which one would you blame? And if you recover, which one would you credit?
     
  13. nwspin

    nwspin New Member

    I wasted a lot of time trying each treatment one at a time, with a timeline average of 6 months per treatment before you see results you can go years without any success. How much damage is going to incur while you are waiting for each treatment to run it's course, successful or not?

    I waited too long to finally have surgery because I tried each one individually which they all failed and I have permanent balance issues because of this. My advise would be to start many at once and if you get better, start weaning off the treatments one by one & see which one affects you the most.
     
  14. wileyriley

    wileyriley New Member

    good point, nwspin. while it would be ideal if time were not an obstacle and we could pursue each treatment until it's end, it just doesn't work that way. you have to decide what is more important-trying to halt the damage this disease causes or running a controlled experiment. unfortunately this does make it very difficult to discern which treatment worked. personally, if antivirals and steroid injections had been available when my meniere's started up, i would have been all over both of them in a full frontal assault to get the vertigo to stop.

    in my opinion, from reading wino's posts, he is aware of this and i think he'll give as fair an assessment as possible as to what worked and what didn't.
     
  15. Henrysullivan

    Henrysullivan New Member

    The key to success, no matter which results-based treatment one might choose first, is to do it immediately. Honest to goodness, Wino didn't even receive a diagnosis for 7 years! Nwspin, I don't know how long you suffered before trying these treatments. What if both of you had tried these treatments when symptoms first developed, before permanent tissue damage might have occurred, and starting with chiropractic? I say chiropractic first, because it is the only one of these treatments which even has a chance to completely eradicate the cause of one's symptoms. So in my mind, the key is to procede expeditiously, similar as they perform triage in an emergency room. The longer one waits, the less success one is likely to have.
     
  16. KTabc

    KTabc Cheese Head Dumbass

    I agreee that the sooner one starts the better. I had my first spin in 1995. Complained about my ears being full, not hearing as well all through the 2000's, but because I was going through my divorce every doctor blamed it on stress. So, I did not get dx until 2007!

    If I know what I know now, I would have started on ALL the treatments here--anti-virals, JOH, and chiropractor. Who cares which one works as long as one does :)

    I am still working it. Still hoping for some relief.
     
  17. Wino

    Wino Resident Honey Badger

    So I had my second adjustment this morning before coming into the office. Here's the breakdown of how it went:

    Got to the chiro's and was escorted into the treatment room. First thing he did was to check my leg lengths again. He said that while the discrepancy was minimal, there was still some there. So he laid me on my right side again and performed another adjustment. This one was lighter than the first one, and I didn't feel that brief grinding sensation that I did the first time. He indicated that part of the reason for this is that the atlas was not as displaced as it was the first time. After the adjustment, he measured the leg lenghts again and told me they were even.

    At that pont, he sat with me and discussed the treatment plan. He recommends a 90-day plan that basically goes like this: 1) 3 visits per week for the first 4 weeks (these may or may not include adjustments; he will check each time to see if an adjustment is indicated); 2) 2 visits per week for the next 4 weeks (same as above); 3) 1 visit per week for the final 4 weeks (maintenance). At that point, he's hoping that we only need to have occasional visits for maintenance.

    Dr. Gumberich has advised that my symptoms are likely to wax and wane as it is part of the healing process. He told me I might go 4-5 days at a time feeling fine, then have a terrible day. But if this happens I should not be discouraged. In addition to the adjustments, he also had his assistant apply a DC-current muscle stimulator to my trapezius muscles for approximately 15 minutes. This was followed by a brief neck and trapezius massage with Bio-freeze application. Finally, I was told to make sure I only sleep with one pillow -- not two -- and that I raise my computer monitor at work to eye level.

    As far as feeling? Well, I was hearing perfectly fine before bed last night, but woke up thismorning with distortion and fullness once again. People sound like they're standing in a tunnel. Almost immediately after the adjustment, I experienced a good 15 minutes of tinnitus in my right ear (which, as mentioned before, I get intermiitently). It was gone by the time the muscle stimulation portion of the visit was complete. I have not noticed any other real differences yet, other than my neck range of motion remains good. I have to admit that the back of my neck is very slightly sore right now (not painful, just sore).

    Next visit is scheduled for Friday afternoon.
     
  18. studio34

    studio34 Guest

    Hank,

    I am not going to take up space here to debate Scott's point, or lack thereof.

    I'm not expecting you to do so frankly and would rather you didn't as I am simply putting forth my observations and this is Wino's NUCCA experience. No need for you to say a word Hank. However, my point is a very valid one and it is something that should be taken on board as it is a well-known phenomenon. It is very much a fact that the "experience" of seeing a chiropractor (or any alt therapist), having the long consult where he delves deeply into the past, is very caring with excellent bed-side manner, has the effect of the patient feeling "understood" and makes for an emotionally satisfying experience for the patient (it was for me -- I freely admit that) whereas, these days, unfortunately, most regular doctors don't have the time to do so and might leave you feeling cold when you walk out of the appt, especially if the therapy involves needles in the ear and other unsavoury but potentially useful treatments.

    I won't go into your other comments because they're mostly empty and were flogged to death in the other thread and this is not the place. I'm definitely over it.

    Wino is not stupid. Wino will know whether any improvement he feels might be due to NUCCA, if he feels any improvement at all. If he no longer needs dex injections, that would be one valid indicator that NUCCA is working.

    Yes, of course he's very clued up, and this is why this is a very interesting trial. Wino UNDERSTANDS placebo effect (and doesn't equate experiencing such an effect to being foolish), and all of the other pitfalls that can lead to a false conclusion -- and he most certainly has MM. If he suddenly enters into a long period of not needing dex injections -- longer than any period previously -- it would be an eye-opener, but not conclusive evidence. I wish him the best outcome of course and hope he never needs another dex injection.

    Wino -- can I ask two questions, and sorry if I missed this previosuly:

    1. In between your symptomatic periods, have you had absolutely complete periods of remission?
    2. In your remissions, no matter how clear you felt, how long have they lasted? What would you say is the longest period you have felt relatively well?
    3. I'm curious as to how long you will continue with the NUCCA treatments? I guess that will depend on the outcome. I would just hate to have Hank turn around and tell you that you didn't carry on long enough or that (I think he wrote this once) the number of adjustments required is proportional to the lenghth of time you have had MM which could mean you'd have to do this for a very long time.

    Cheers ... Scott
     
  19. Wino

    Wino Resident Honey Badger

    Scott,

    I will answer your questions below, but did want the chance to address my thoughts on the placebo effect with the rest of the board. For some reason, people get really rankled when it is suggested that they improved due to a placebo effect as if it is suggesting some type of defect in that person's character, or susceptibility to suggestion. I, for one, do not believe that to be the case at all. The placebo effect, if anything, is a testament to the incredible power of the human mind and how harnessing that power -- even subconsciously -- can lead to quantifiable good results. It is the ultimate testament to mind over matter, and I see the placebo effect as a good thing. If I could wave a magic wand and cure myself purely with a placebo, I would do it tomorrow and wouldn't care less what people thought about it. The bottom line is I would be better.

    Now to the questions:

    1. Yes. Not only have I had periods of complete remission -- only on the right, as the left has been status quo for 18 years now -- but in fact have had weeks at a time where my hearing was at an even higher level than my usual baseline. The easiest way for me to tell is by keeping track of the volume level I use for the TV in my bedroom. When I'm not having an episode, I use the same level across all channels and can hear it just fine. During weeks when my hearing is up, I can dial down the volume some 6-7 levels below the norm and hear the TV perfectly fine. Not only that, but it will be too loud for me if I keep it at the usual level. My bouts with fluctuation usually only last about a week at most. This current bout is going on 3 weeks and is the longest I've ever dealt with it on the right side.

    2. From the time my right ear started acting up, the longest remission I have had lasted about 4.5 months. In fact, that was the remission I had just before this most recent attack. I don't just feel relatively well, I feel perfectly fine. Then just like that I will wake up one day with distortion and have to deal with it for the duration of my "attack."

    3. At this stage, I am fairly set on continuing the NUCCA treatment at the minimum for the first 4 weeks of the "correction" period. The way the chiro described it, my problem should be corrected in 4 weeks. Then there are 4 weeks of exercises and adjustments designed to "hold" the correction. Finally, there is the phase where you only go in for occasional maintenance. The way I see it, if I don't have a correction of my problem within the first 4 weeks (getting treated 3 times per week), I see little hope that continued NUCCA treatment will make any difference. As it stands right now, the only demonstrable difference I have had after 2 adjustments is the range of motion in my neck.
     
  20. Henrysullivan

    Henrysullivan New Member

    Wino, how is your aural fullness and hearing presently?
     

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