80% of sufferers go into natural remission

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

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  1. jaypr

    jaypr New Member

    Joanne it is wonderful that you have found your answer but it is not the only way. I have been fortunate to have remission or burn out from menieres and I suspect this has also happened to many more people who no longer post here or never joined this forum anyway. My payment for the vertigo ceasing is 80 to 90% hearing loss in one ear.

    Fortunately my last vertigo attack was in August 2009 and I hope it never returns. But for me burnout or remission has happened. Having said that if it returned and returned at the ferocity it was I would probably have surgery.
  2. sirlanc

    sirlanc New Member

    Its great to hear you are living a normal life with no spins or fear, VNS is very effective for stopping vertigo. In my case I have reached the same condition as you, living a normal life without fear without VNS or other intrusive procedures. There are many versions of the MD monster, some are killed by the knife while others fade away with time.
  3. Intrepid

    Intrepid New Member

    That's a perfect reply. There really are many versions of Meniere's Disease as there are of migraines. It's up to the individual to decide what works best.
  4. John of Ohio

    John of Ohio New Member

    And that decision, deciding what might work best, is best made in consideration of all available Meniere's treatment information. No other website or Meniere's informatioin resource has as much as this website, particularly the treads on the Database page, here: http://www.menieres.org/forum/index.php/board,3.0.html .

    --John of Ohio
  5. sjwo1

    sjwo1 Hiking Utah

    This is a very good thread. Sir Lanc is correct to post that a very high % of people do go into remission naturally. Whatever herbal or otherwise "treatments" are introduced at least buy some time…nothing wrong with that... as long as it does no harm. Those poor souls who are stuck in the 20% no matter what they do will need to rely on medical intervention normally aimed at symptom control. Including all the stuff you wish you didn't have to do…gent...surgery etc. But the good news is that after you try everything…and still suffer... the medical intervention has good success for many. But for the masses…it retreats on its own.
  6. sirlanc

    sirlanc New Member

    Thanks Sjwo1!
    The statistics I know are 80% natural remission in 7 years, from the remaining 20%, 15% manage their condition with medication or non-surgical procedures, and only 5% require surgical intervention like VNS.
  7. June-

    June- New Member

    sirlanc, does 80% natural remission mean permanent remission? Remission from all symptoms?
  8. Vicki615

    Vicki615 New Member

    I would like to know that answer as well.
  9. John of Ohio

    John of Ohio New Member

    That's the crucial question. Is any sort of "remission" merely an interruption in MM symptoms, of some varying period(s); or, is it a permanent suppression of symptoms, where life can return to normal, without concerns for recurrances?

    Too often, "remission" refers only to the former. That's welcome, but insufficient.

    --John of Ohio
  10. MDH

    MDH New Member

    I've been reading this thread off and on. It's an interesting discussion. But at some point I went back to the beginning to refresh my memory of what started this discussion. And there I saw this 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"

    Within 5-10 years? Really? What about those of us who have jobs, careers, etc ? In my case, after dealing with MM for two years, I felt I reached a fork in the road: either lose my job and career, go on disability, and keep throwing treatments at the disease in the hope that something finally has a positive effect, or....look at surgical intervention. I chose the latter. It allowed me to return to my career and I haven't looked back once, questioning my decision. To me, this quote implies a third option, which is to wait it out (?). That wasn't a choice I would have liked. I had gotten to the point where I could barely leave my house.

  11. sirlanc

    sirlanc New Member

    The literature refers to stage 3 as per bellow "permanent remission" a.k.a. burn out. 80% reach stage 3 with no treatment.

    Stage 1
    Vertigo is usually the main symptom at this stage and may be accompanied by severe vomiting. Vertigo attacks can last for hours - sometimes days - tending to occur in clusters. Balance returns after each attack but you can feel ‘washed out’ for days after. Often, by the time you present for diagnostic tests, the ear has returned to normal.

    Stage 2
    Attacks of vertigo continue.
    Tinnitus increases with attacks of vertigo and becomes continuous.
    The feeling of pressure or fullness in the ear may be worse before and during a vertigo attack.
    Hearing fluctuates, but never returns to normal levels.

    Stage 3
    Your hearing loss may be severe at all frequency levels to the point where it is difficult to recognize speech. There is no longer fluctuation in hearing levels as the hair cells of the inner ear have been destroyed. The tinnitus remains but may seem less of a problem because you've got used to it. Attacks of vertigo eventually cease.
  12. June-

    June- New Member

    These stages are not what many of us experience. Hydrops does not always begin in the part of the ear that causes vertigo. But it may progress there for those of us that start with cochlear hydrops.
  13. sirlanc

    sirlanc New Member

    Good point. For some the emotional burden, debilitating fear of attacks, or simply lack of ability to function for even a short duration requires immediate action. For others like me holding a full time job through the whole evolution process of MD is an option. It is valuable for people to know that in all likelihood (80% of the time) the vertigo will end sooner or later. This small snippet of statistical information was the key for my decision not to wait not cut. I am content with my decision. (so far) Yet statistics are just a tool, we make our own choices. This reminds me of a quote from a TV serious I loved. The prisoner.

    "I am not a number, I am a free man"

  14. Vicki615

    Vicki615 New Member

    I guess I am in the lucky 20%, if that is an accurate statistic, 48 years and no permanent remission, doubt it will ever happen for me, but Thank Goodness for antivirals :)
  15. jaypr

    jaypr New Member

    Sirlanc Come in mumber 6 your time is up. Who is number 1 ? Great series been to the village a couple of times.
  16. Joanne5170

    Joanne5170 New Member

    I read your answer to my post. With all due respect to say that the VNS kills people
    with a knife and other the disease fades away.

    Neither is true I have been on the site since 2000 and no has died from a VNS
    99% will tell you they are sooooooooo happy they had it and lead a normal and
    healthy life without meds or fear of attacks .

    How many of you on this site are afraid to drive or make appt. never knowing when
    an attack will come.

    Like Cancer we are still not sure what the actual cause of the disease is there are many
    theories. Menieres has many theories of what causes the disease. The bottom line
    no one is sure and no has definite cure.

    My plan was to get rid of the disease so I could get up in the morning take no meds
    not worry about my diet (other then staying size 2) I wanted never to be dizzy again
    or worry that my remission would end.

    The cure is a VNS or Laby that is the reality for getting your life back.

  17. sirlanc

    sirlanc New Member

    Sorry my post was not clear, here is a clarification.

    "There are many versions of the MD monster, some [MD monsters] are killed by the knife while others [MD monsters] fade away with time."

    Here is my post on VNS

  18. Joanne5170

    Joanne5170 New Member

    To silanc

    Get your listening ears on and pay attention to what I am saying as well as what
    most of the patients on this site have been saying for the last years

    They got there life back and would do it again. Your posts are hurting patients
    who could get help and have life. Drugs and diets are not a permanent answer for
    patients who have disabling vertigo.

    A lot of us lost our jobs and our lives VNS restored us to old selves.
    For many of us diets and drugs just don't work. Get it
    I don't know where you get your percentages but you need to stop making statements
    that are not true. You are giving patients who know nothing about this the wrong
    message. Stop It

    Ask most of us on this site who have had the VNS and they will tell you they are sorry
    they waited so long.

    As for balance headaches etc. 12 Years since I had the VNS near perfect balance
    no headaches no dizziness or vertigo AT ALL. And hearing is till there in the operated

    No one lost there facial movements or had any brain damage. Stop your scary
    tactics you are not helping patients to get their life back.

    P.S. New patients should be encouraged that there is cure if the vertigo goes on
    for more than 1 year no one should keep suffering

    I spend 8 hours on the floor hanging on to the coffee table the room spinning 100
    miles vomiting until someone came home to clean me up[. For patients like me

    John Ohio diet and virus meds meniett box did not work The VNS was the cure

  19. bulldogs

    bulldogs New Member

    Joan speaks the truth!

    When I was doing my physical therapy for my laby (2 sessions) I was in a group activity and one of the people had NF2 and just got his second VNS from Dr. Brackmann. Both ears! He had acoustic neuromas on both his balance nerves. He gave me his email, but I lost it. I will look for it, probably in my medical records envelope. He loved Dr. Brackmann and also liked a Dr. at House Ear named Freidman (sp)!
  20. Intrepid

    Intrepid New Member

    Actualy, that is not what he is saying at all.

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