80% of sufferers go into natural remission

Discussion in 'Your Living Room' started by sirlanc, Jan 31, 2014.

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  1. sirlanc

    sirlanc New Member

    Medical Sources
    Vertigo: Its Multisensory Syndromes
    "This book is really a tour-de-force, an exhaustive, scholarly work clearly directed to the interested clinician. It will be of great value to almost all physicians but in particular to neurologists who so often encounter the complaints of vertigo and related problems.” (Journal of Tropical and Geographical Neurology)

    Page 86 - http://www.amazon.com/Vertigo-Multisensory-Syndromes-Thomas-Brandt/dp/0387405003

    Quote: "the indication for surgical intervention becomes even more doubtful if one takes into account the relatively benign natural remission rate of about 80% within 5-10 years"

    Book text:

  2. June-

    June- New Member

    What about the 20 % ? Do they have the same disorder as the 80 % ? Do the same treatments apply? Do we have to wait 5-10 years to try something just in case we are in the 80 %?
  3. sirlanc

    sirlanc New Member

    80% is 5-10 years, over 50% go into remission in 2 years or less. I have found no literature differentiating between those who do go into remission and those who do not.
  4. Vicki615

    Vicki615 New Member

    The remission they refer too, doesn't indicate if it is permanent or temporary, or the length of the remission. I am assuming it is temporary from everything I have read that MM patients have periods of being symptom free.

    •Temporary spontaneous remission. ◦Some patients experience periods of temporary remission (absence of some or all symptoms) for no ostensible reason (spontaneous). Some temporary spontaneous remissions continue for many years. Other temporary spontaneous remissions may last only months, weeks, or days.
  5. Intrepid

    Intrepid New Member

    I am wary of these types of statistics. However, I've been on this forum for a long time and I will say that so many posters leave and come back after a few years to say their lives are going great and MM is merely a nuisance instead of a big problem.

    sirlanc also has a handle on his symptoms and he had it pretty bad. I tend to agree with him that things level out for the majority over time. That said, I wouldn't peg it at a precise percentage. Too many variables.
  6. HappyGrace

    HappyGrace New Member

    Thanks for the great link, Sirlanc.

    I also wonder if they are referring to permanent remission. Wow, wouldn't that be great!
  7. angrychicken

    angrychicken New Member

    My father had Meniere's in his left ear in his 30s and went into remission. The beast came back 30 years later and claimed 100% of the hearing in his right ear. Remission is just a long clock on a ticking time bomb.
  8. Vicki615

    Vicki615 New Member

    I agree with Colin I think most of us have periods free of symptoms, short lived or longer but it comes back in most cases afaik.
  9. June-

    June- New Member

    Would you wait 5-10 years for treatment if you had mono or shingles or another viral disease to get treatment since there is an 80% chance you would survive even if during that time irreparable damage would most like occur to internal organs or heaing or sight?

    Is it not true that a large % of the 80 % suffer permanent hearing and or balance damage in one or both ears.
  10. sirlanc

    sirlanc New Member

    As mentioned in my initial comment, even given the fact that all non-surgical treatments show the same long term success rate as doing nothing would still recommend to try them for their psychological and other potential health benefits
  11. June-

    June- New Member

    I would like to know the criteria. For instance, in my case, if I only got 6 years relief and developed unrelenting vertigo and distortion tomorrow, would the 6 years of heavenly undistorted hearing be meaningless? what about the people who get years of relief from vertio from steroids but in the end they fail to work, should those treatments be dismissed? Do you consider anything that only works for 5 or 10 years 'psychological relief'? I am not following your thoughts on this one because if I develop problems tomorrow I will still be forever grateful for the last 6 years of normal hearing.
  12. Vicki615

    Vicki615 New Member

    The 80% remission you refer to is something said in the early 1980's. Has any other study or such backed up that one claim? and I highly doubt the remission referred to is permanent remission, many of us have symptom free days at times, I would not classify that as a remission unless it is long term.
    What is the reference's definition of remission? I would like to see this study in its entirety instead of one blurb from it.

    For almost 50 years I have suffered until starting antivirals, I have had symptom free days before the AV's but never experienced a remission for any length of time.

    I am afraid this 80% remission statement is misleading and gives people false hope.
  13. HappyGrace

    HappyGrace New Member

    June, I think what he is saying is that we *should* do those other things, of course, but in the long run, it's the same rate of success as doing nothing (assuming the study is true)

    80%-sigh-wouldn't that be great! I would love to know too if the study means permanent remission or not.
  14. gfsound

    gfsound New Member

    In no way do I mean to minimize or trivialize your fathers suffering (MM sucks no matter when you get it or how you slice it, we all know), but I would really like to start a 30 year remission....right about NOW. Let me revisit this thing when I'm 70, by which time medicine will have greatly advanced, and hopefully a cure will have been found. If not, at least I got 30 normal years under my belt.
  15. angrychicken

    angrychicken New Member

    I completely understand - most people around here would absolutely take a 30 year remission even if they knew it would be back and be bad. My father counts himself lucky - the disease didn't really interfere with his family life or career. It came back after he was retired. The grandkids are getting used to yelling into his good ear :)
  16. June-

    June- New Member

    I still dont follow. Is a temporary (say 5 or 10 years) success the same as suffering for those years if in the end we have some damage any way? It is a distinction with a very big difference in my book. I am missing the point here somehow I know because sirlanc is a sharp guy. I just dont get this one.
  17. John of Ohio

    John of Ohio New Member

    I note that the word "remission" is not the same as "cure." After a period of remission, whether with Meniere's or cancer, the disease and its symptoms can come back at some time in the future. I'm no longer so interested in learning the remission rate of LS/D or other Meniere's therapies; rather, I want to learn how often the therapy provides continuing, un-abated, no-symptoms relief.

    With my regimen, I've been in "remission" now since about 2002. Because I have a reasonable understanding of how each regimen element helps suppress MM symptoms, I have every reason to believe that my remission period will be on-going and without termination so long as I adhere to the regimen. As I did once (in 2002), if I go off the regimen, the imbedded, suppressed (but always present) herpes virus will have the opportunity to resume replication and activity, and I'll have MM symptoms once again.

    So, the meaning of "remission" needs to be accounted for. If 80% of LS/D patients have 5 or 10 yr remissions, without symptoms, that's nice. But what if nearly all of those sooner (or probably later) start having attacks again, when the remission period is over and low salt/diuretic therapies no longer work?

    I want on-going, continuing symptomatic suppression, not just variable and random periods of remission.

    --John of Ohio
  18. Intrepid

    Intrepid New Member

    Those with a viral cause did something early on and preserved their hearing. It's not accurate to say nothing changes whether you do or do not try something.

    maybe the vertigo attacks will lessen with time but that is just one component of MM. I think people should be as aggressive as possible when first diagnosed to preserve their hearing.
  19. sirlanc

    sirlanc New Member

    Hey June,
    I recommend to try and low risk treatment that makes people feel better. Such treatments may reduce suffering, improve patient outlook and quality of life. Based on the data I have been able to find there is limited evidence that non-surgical treatments reduce the frequency on vertigo in the short or long term when compared to doing nothing. Based on data I have read, surgical procedures like VNS terminate vertigo in 95% of cases, other symptoms like hearing loss are not resolved by surgical procedures or other treatments.
  20. Vicki615

    Vicki615 New Member

    Not so from members here. Some have said AV''s have restored their hearing back to normal or close to it documented by hearing tests. I have read studies saying the earlier studies such as fribergs and others claiming what the natural history of MM is, are flawed due to the ways they followed up on patients etc.
    I have come to take what the so called experts say in reference to MM. with a grain of salt since most do not acknowledge how AV's suppress symptoms in about 90% of MM patients.

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