hydrops not the cause of MM symptoms??

Discussion in 'Your Living Room' started by gtrvox, Aug 6, 2007.

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  1. gtrvox

    gtrvox our pooch Hugo

    This article is not an easy read but worth the effort. It casts major doubt on the prevalent theory that hydrops is necessarily the culprit (or the *only* culprit) in MM symptomatology

    http://www.tbregistry.org/PDF%20Folder/12(2)final.pdf

    George
     
  2. Henrysullivan

    Henrysullivan New Member

    Hi George,

    What I cannot understand about the thinking that Hydrops is the cause of Meniere's symptoms is that Hydrops itself has a cause. Hydrops is not just bad luck. Guns, for example, do not kill people, people kill people and use guns to do it. Hydrops doesn't cause Meniere's; something causes Hydrops which results in Meniere's symptoms. Hydrops is the result of a physiological process, most likely mechanical in nature, which necessarily results in a compromise to the functioning of the inner ear. That compromising of the inner ear functioning is the symptomatology we know as Meniere's. Of course, I believe that in more times that not, the cause of the Hydrops is just what I have said many times, a misalignment of the first vertebra. That is the case with my symptomatology. And in that there is no doubt.

    I hope you are doing well.

    Hank
     
  3. SamC

    SamC Guest

    You got it Hank. In my opinion Meniere's doesn't exist in reality. Meniere's is not a diagnosis, just a label, a general catch all for a failure to diagnosis. Hydrops is diagnosed by diagnostic procedures, not symptoms. Meniere's is a label given when certain symptoms are observed and all other causes are ruled out. If hydrops is found then, hydrops is the diagnosis. As I have said before there is no "disease" called Meniere's. In 1861 Dr. Prosper Meniere described symptoms commonly seen in hydrops caused by other disease. They did not have names for the other diseases then, such as Zoster virus, so it was called Meniere's disease after Dr. Meniere. In 1932 hydrops was first discovered and found to be the cause of so called Meniere's disease .... now 2007 the whole Meniere's business is gone crazy and it is a big money making deal, so its advocates are not about to let it die. As I have said before, with the internet then mm was invented for Meniere's disease with no respect for skin cancer patients. It gets worse everyday, but something you have to decide for yourself.

    No hydrops doesn't cause mm (skin cancer) symptoms. In my opinion, Meniere's is fiction, but I am a nobody so who cares...
     
  4. Amethyst

    Amethyst She believed she could, so she did.

    Hank and Sam - I think there are very few people here who wouldn't agree with you. Most of us know Meniere's is a dx given for lack of a true one. For some misalignment is the true cause, for others virus is....and for some, the true reason just simply has not been found yet.

    Very interesting George - thanks for posting the article.

    Lately I've been attempting to look closer at the hydrops connection since my recent ECoG where I was told there are no hydrops currently present. Those results have me completely stumped since, although I had the sac decomp surgery, my left ear has been full of pressure again...along with the rest of my symptoms. So how is it that the ECoG could find no evidence of hydrops when I'm this symptomatic?

    Guess it shows that there's still a lot to figure out when it comes to meniere's.

    Amethyst
     
  5. SamC

    SamC Guest

    Ameyt., Well said, but a diagnosis of hydrops comes from diagnostic proceure, VEMP, EGoC, etc. If your test didn't indicate hydrops, then guessing hydrops could only be confirmed by autospy. You probably don't want to volunteer for that. So what causes your symptoms? Could be lots of things and only a guess if testing doesn't reveal anything. A common cause of your symptoms is vestibular virus. Many folks have vestibular virus and no hydrops, this explains the autosies done on folks with a Meniere's label that reveals no hydrops. In a large percentage of these cases, virus is found in the vestibular system, offering a reasonable explanation for their vestibular symptoms called Meniere's disease. The disease wasn't "Meniere's", but virus. I refer anyone questioning this to "Viral Neuropathies in the Temporal Bone" by Dr.'s Richard R. and Mark R. Gacek. I especially turn your attention to page 67, the chapter called, "Meniere's disease: A Form of Vestibular Ganglionitis."

    Virus is seen in cases of ELH (hydrops), BPPV, MAV, so called Meniere's, etc.
     
  6. wingey1

    wingey1 New Member

    Hi
    I am particularly interested in this, as I am trying to find the "reason" for my symptoms, and I seem to get more and more confused. Could you explain what "hydrops" actually is - is it the sac filling with fluid, causing vertigo?
    I am awaiting some tests myself to see if I have/don't have certain things going on, but it would really help me if I just understood this bit!!
    Thanks all
     
  7. gtrvox

    gtrvox our pooch Hugo

    Wingey: I've recently explained it on another thread (which I can't find at the moment) Google is your friend :) If you google "endolyphatic hydrops" (with the quotes) you'll get some answers. In short, hydrops is a fancy term for excess fluid (in this case the endolymph in your inner ear) but no one knows whether it's overproduction, failed reabsorption or whether indeed this particular excess even causes symptoms in the first place. It's all guesswork when it comes to MM. But like I said, google the above - there are a lot of helpful sites on the topic

    George
     
  8. SamC

    SamC Guest

    George, I respectfully disagree. Endolymphatic Hydrops is an increase in the endolymph fluid which is postive charged and potassium enriched. For various reasons the endolymph increases until the endolymph sac seals against the bony Labyrinth wall. Pressure is put on the surrounding perilymph fluid, bathing the sensory and neural structures, which attracts the postive charged potassium and this mix is neurotoxic. It simply is toxic to the nerve sensors causing them to send false electrical impulses to the brain, causing various symptoms.

    One first must understand that electrolytes are important to nerve function. This is why vestibular folks talk about sodium and potassium and keeping them balanced. This is why many doctors tests hydrops folks electrolytes frequently. Then you must realize our nerve system is basically an electrical system. When the nerves are damaged or disturbed then they don't send a correct signal, much like an electrical wire with bad insulation and shorts out or one that is cut.

    Now this is why VNS surgery stops vertigo ... when the vestibular nerve is cut, then there is nothing to carry the false signal from the hydrops ... oh, yes the hydrops still exist, but no symptoms. If hydrops moves to the other side, then vertigo may start again until that vestibular nerve is cut. Remember the vestibular nerves are our balance nerves, so with both cut, no balance from the inner ear and no vertigo.

    Hydrops is forever and no cure yet, but some good controls. Yes, scientist do know what hydrops is and how it works. Hydrops is from the word hydraulic and Endolymphatic from the expanded fluid, endolymph.

    Endolymphatic Hydrops is well understood, but most doctors are not educated on it, so they come up with this nonsense to appease insurance and the Meniere's profiteers. Mysteries make more money than disorders that are understood.

    1000's of autospies from so called "Meniere's" and hydrops folks who have donated their temporal bones, have long resolved what hydrops is and how it functions. Virus affecting the vestibular nerves is well understood by doctors that care to study the evidence.

    If doctors have a degree in Neuro-otology then they know are should know how hydrops works. The information I gave you describing hydrops is from a chapter in a textbook they are required to study and have knowledge of. The trouble is many of them are out to make a name for themselves and have to come up with something new to resolve the Meniere's mystery ... they ignore the results of numerous autopsies and that there is no mystery in hydrops, except how to cure it.

    There are many vestibular disorders all with scientific names, however many doctors and Internet Meniere's experts just pile it all into the Meniere's basket. Look at the vestibular forums ... those claiming to have Meniere's disease, they abbreviate mm, are at least 70% of the members. By definition Meniere's disease is rare, much rarer than hydrops, BPPV, PLF, etc, etc. The internet is loaded with ads for Meniere's help, each ad offering a little something different ... the goal ... to make money. Forums are loaded with the same information over and over, the same arguments happen again and again ... why? Because Meniere's is big business, big money and no medical Neuro-otogy expert will step forward and stop it, even though they all learned better in neuro-otology medical school. Many good doctors fear the crooked lawyers that would sue on behalf of Meniere's advocating insurance companies and doctors getting rich off sham Meniere's surgeries. It is an ugly business, driven by greed and envy.

    I go to a doctor to find out what is wrong with me, not what isn't. Think about it now open minded ... if anti-viral stops your so called Meniere's disease symptoms, then you have a virus, not any mysterious disease called Meniere's. I was ask the other day if acyclovir can stop Meniere's disease, I said no, nothing can stop Meniere's disease, it is unstoppable because no one knows what it is. Acyclovir will arrest virus and if your symptoms are caused by virus, then yes. If caused by whiplash from a traffic accident, then no.....consider vestibular therapy. Meniere's disease in my opinion is pure fiction ... it doesn't exist ... sure you have symptoms of vertigo, hearing loss, etc., but there is a cause and it can be found. In 2007 a Meniere's disease "diagnosis" really lack thereof, is unacceptable. Medical science has advanced since the late 1800's contrary to popular Meniere's belief.

    No offense is meant to anyone by this post ... in any way.
     
  9. Rick

    Rick New Member

    ...From the things that I've found that trigger my symptoms, many of them will also trigger an extracellular to intracellular shift of potassium. Considering that endolymph is 99% potassium, I suspect this is the means by which pressure is changed or by which the endolymph is effected. But again potassium metabolism wouldn't be the cause or this would happen to everyone. What ever we have is making us susceptible to these changes.
    Rick
     
  10. Dizzy Little Piggy

    Dizzy Little Piggy OINK OINK

    Sam,

    I thoroughly enjoyed reading your last post. It is very interesting. Unfortunately it doesn't help me, who has had Meniere's in both ears starting in 1985 and 1992. I am now almost completely deaf and still get dizzy up to 40 times a month (averaging about 20 times). I went to Mayo Clinic in Rochester, MN from 1986-2001 and finally decided that I was wasting a lot of money on travel costs for something that there was no cure for. Mayo never referred to it as Meniere's, they always called it Endolymphatic Hydrops on paper. Even still our Government has classified Meniere's Disease as a reason for SSA Disability only if you can prove that there is no job that you are able to work in. Meniere's or Hydrops, it really doesn't matter because it has totally made me do a complete 180 degree turn in my lifestyle. It is sad that there is very little research dollars spent to fix this thing. It all sounds so simple, too much fluid in the endolymphatic sac. I honestly believe that it could be solved if an effort was made by our government or Medical Society Research. It is too bad that it is destroying our lives. I have accepted the fact that I have it and I am living my life to the fullest possible. I take my meds when I get dizzy. I stay away from loud places. I talk to individuals rather than groups. I am a happy camper in spite of what "Meniere's has done to my life.

    Piggy
     
  11. jkp_2_98

    jkp_2_98 New Member

    Interesting thread! In addition to viral don't forget autoimmune causes. Your typical autoimmune blood test will not detect what are believed to be a lot of autoimmune disorders, so even if you've tested negative for autoimmune disease, it still may be the cause. The inner ear has a very sensistive, separate, immunology, so even a slight autoimmune disorder could wreck havoc in the inner ear. Of course it's all circular logic, tomatoe or tomato, you can argue that Meniere's isn't a disease, that something causes it like a virus or autoimmune disorder, however no one knows how/why (but there's conflicting theories) a virus would attack the inner ear and how/why this is related to vertigo or hydrops nor how autoimmune disorders are caused, nor how to cure them, so even if you've been given a more definitive diagnosis than Meniere's it doesn't matter as you're still in the same boat, just a boat with a different name. That's why a lot of neuro-otologists, ENTs, and other docs don't worry about putting in a lot of extra effort to zoom in on your inner ear disorder, (which is time consuming, costly, and means your staff has to go to battle with your insurance company) as it all ends the same (either goes into remission or becomes refractory). If it becomes refractory, like most on this list I would suspect, then your left with rather crude methods of relief: surgery or vestibular suppressants and continued hearing loss. The only way to "cure" meniere's (which would also cure a whole lot of other diseases) would be to figure out those great mysteries of how our immune system functions, how/why viruses can become alternately dormant and refractory, and what's still a mystery (how the inner ear really functions).
     
  12. gtrvox

    gtrvox our pooch Hugo

    Sam, I enjoyed reading your post - you're obviously very knowledgable and I don't mean to cast any doubts on your erudition in this field.

    As for the above: hydrops is indeed Greek in origin and is composed of the roots hydro - water, and opsis - appearance. Always turn to my trusty Websters :)

    There are numerous theories and the one you mention (toxicity of endolymph/perilymph mixture) is just one of them. I recently wrote about it on another thread - this theory is not currently the only one:

    http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#causes

    Once again, I enjoy and welcome any discussion

    George
     
  13. SamC

    SamC Guest

    George, Thanks for the links. I have studied Dr. Hain's writing for several years. Dr. Hain researchs more from theory than actual test groups or patient diagnosis. Here lies the problem. MD and ELH have board approved definition. There is a consistency in text used for educating board certified Neuro-otologist. Many choose to ignore this ruling and accepted text.

    Now when doctors or researchers take issue with diagnosis based on symptoms, then it is a free for all. ELH is not the only cause of the symptoms Dr. Meniere described 1861, althought it is the most common. Vestibular virus without hydrops is very common, MS can cause the symptoms without hydrops. This isn't Meniere's, it is a result of MS. It can't be Meniere's ... we know the cause ... MS. So we agree that the symptoms described by Dr. Meniere 1861 are not always hydrops. Again this is the reason many doctors are calling "Meniere's disease" a trashcan diagnosis. The board ruling is Meniere's disease is Idiopathic Endolymphatic Hydrops. Now by definition, which is important to have consistency in medicine, we must agree to this. If the symptoms described by Dr. Meniere are found and no hydrops, it can't be labeled Meniere's disease. The cause needs to be found in either case, eliminating the use of the term and label of Meniere's disease.

    The old tomatoe and tomato comparison would apply to whether one prefers Meniere's disease or Morbus Meniere's, not whether to call it hydrops or Meniere's. I probably stand alone when I say Meniere's disease is just fiction and such a label does not belong in modern medicine. It would be nice to honor old Dr. Meniere, but the failure for doctors to honor board rulings and honor research that is so highly regarded that NASA funds and praises it, is where the hope of any cure fades, because like every discovery that shows promise, there is a group, many times a majority, that beats it down.

    It has been suggested that T cell's show promise in repairing inner ear nerves. The lady doctor that told me this says she is not convinced either way, but is in favor of more research using human test groups. She is a small minority. It is not that the research isn't being done, it is that the opponents of any new research bash and thrash the promise of good with all the "what ifs". It is held back by all kind of government regulations made by control folks that disregard our health over their own agenda.

    Interesting ... folks of the same mind frame (government connected) were aware that a lab in the eastern USA was developing a viral weapon to be tested on humans they regarded as of no use. The poor starving Africians and homosexuals of San Francisco. The hepititis vaccines going to these places were laced with this virus and the experiment was successful in their minds, until it left these groups and spread to the general population. Oh yes and we were told that this all came from a green monkey. No one ever questioned the reality of this green monkey theory. The monkey or monkies would have to have to bitten several million people in a 24 hour period or the bitten infected person would have had to have had sexual activity with several million in a 24 hour period. It all happened in the period the vaccine was injected in these "test groups". This info was all released several years ago. No one cared it was intentional, the focus has to be now on stopping it.

    I see the same with vestibular disorders. When over half the population is affected by vestibular problems, because of a government experiment gone bad, then the government will release research and demand more is done. The bad experiment will be blamed on Meniere's disease. By the time we find out it was intentional and not mysterious Meniere's, no one will care, just care about getting cured. Sounds like science fiction doesn't it, well, so does AIDS to me. I still can't believe such a thing is real.

    I prefer Dr. Li's write up over any on the internet.

    http://www.emedicine.com/neuro/topic412.htm


    JKP: Thanks for reply. I don't see any mystery how the inner ear functions. It is a microgravity situation as well as electrical. The fluid movement over the nerve sensors sends electrical signals to the brain that instructs the muscles on how to react for balance. You might find some of the NASA research interesting. Did you know when astronauts return from space it takes a week or so before their inner ear functions normal? The lack of gravity over an extended period can lead to inner ear deterioration. This is why NASA uses and experiments with gravity simulators. I have a theory on this that might help hydrops, but that is all it is, a wild theory.

    DLMP: Yes, unfortuantly for many of us, we are to far gone to hope for a full recovery. I am surprized the Mayo gave you a hydrops dx. They don't have a very good record with helping anyone from what I hear. Usually give out the old Meniere's dx, lower sodium, pop a valium and have a nice day. I know of a few cases where they do double VNS surgery. That will stop vertigo everytime. LOL!

    Rick, Correct and folks vary because there are many different vestibular disorders. Treating for hydops in a Schwaanoma patient would be a waste of time. This is why I advocate getting a real diagnosis and saying no to getting thrown in the Meniere's dumpster. Don't give up until you know what is really happening.
     
  14. gtrvox

    gtrvox our pooch Hugo

    Sam, not to beat a dead horse here but how do you account for post mortem ELH in people who never had any vestibular/cochlear symptoms in life?

    George
     
  15. SamC

    SamC Guest

    George, ELH is not based on symptoms, it is a diagnosis by diagnostic testing or autopsy. Hydops can cause one or more symptom to all different degrees or NO symptoms. Some folks with ELH have just tinnitus, some just vertigo, etc. Symptoms differ, but not action causing it. Same reason folks with hydrops from virus can lose all symptoms if caught early enough. They still have hydrops, just nothing agrivating it. If the endolymph membrane does not suffer anymore surges of fluid, then the seal to the bony labyrith structure holds. One may have had an initial hydrops action that never leaked, so they never had symptoms, or their symptoms were so mild or were attributed to a different illness. It makes sense to me, but may not to others. I wish I could post a copy of the medical text, but copyright is sometimes punished worse than murder. Best I can do is use my understanding of it and reword it. Not always easy to understand. Sam
     
  16. Rick

    Rick New Member

    ...I think this is basically what Sam is saying but in my case, at one time I was plagued with multiple vertigo attacks every month and even weeks. By elimnating triggers, I have gone 4 years without a vertigo attack. While I still have tinnitus, fullness, and hearing loss, I don't feel like I'm rally dealing with a disease anymore. So what if I had always followed the diets I am presently on? Seems to me, I would have never gotten a vertigo attack so I would have probably been one of those people you are talking about.
    rick
     
  17. gtrvox

    gtrvox our pooch Hugo

    Possible but is it likely? Imagine an average Joe/Jane...their whole life they go without any vestibular or cochlear symptoms. Highly unlikely that they would have followed any special diet (we'll never know this, of course!) Then, upon autopsy, it's discovered there was hydrops in the inner ear. I would be inclined to think that what it means is this: hydrops is a necessary factor in order to be symptomatic - but not the only one. In other words, not causative in and of itself. Coupled with a yet unknown agent (virus? auto-immune disorder? bacterial inflammation?), the usual symptom chain is then unleashed.

    Just a theory, of course. Like everyone else, I'm fumbling in the dark here.

    George
     
  18. Rick

    Rick New Member

    ...I think a better "what if", than the example I gave, would have been what if i had not become allergic to gluten and what if I had not developed insulin resistance. And I've seen atrend on this board of where completely unrelated disorders are exasperating our meniere's. Your right, the odds of average Joe/Jane following the diets I'm on are remote, but there are many that never get the two conditions I have.
    ...You have to also remember that I don't believe vertigo attacks are a symptom of hydrops, meniere's, etc. The vertigo attacks are a result of the damage caused by hydrops/Meniere's. Since the tinnitus, fullness, hearing loss is constant, I believe those are the true symptoms.
    Rick
     
  19. sparrow

    sparrow Guest

    Wanted to stick my two cents in here:

    Amythest ~ Wanted to share with you that there is a high prevalence of false negatives and false positives with ECOG testing. Alot of the interpretation or misinterpretation is caused by inacurrate readings by the audiologist. My first ECOG I kept complaining that I didn't hear the clicking in my left ear. Her response is "that is silly because it is recording something". I took it several steps higher and after testing the machine they found it wasn't recording correctly, so I went back and retook the test. It went from a negative test to a positive test or "abnormal and suggestive of endolymphatic hydrops". It was then admitted that they are using an older machine, very outdated and prone to misreadings.......... go figure.

    Sam ~ Wanted to share with you a comment my neurotologist said to me when I asked him to remove my entire ear to rid me of my balance, dizziness, etc. His comment is that if he were to severe the vestibular nerve or remove my ear, it has been his experience that for some of his patients the symptoms continued because it was coming from the brain (i.e., migraine related) and not the inner ear. Your comment earlier in this thread, which led to my comment : ""Now this is why VNS surgery stops vertigo ... when the vestibular nerve is cut, then there is nothing to carry the false signal from the hydrops ... oh, yes the hydrops still exist, but no symptoms. If hydrops moves to the other side, then vertigo may start again until that vestibular nerve is cut. Remember the vestibular nerves are our balance nerves, so with both cut, no balance from the inner ear and no vertigo.""

    Respectfully,

    Sparrow :D
     
  20. Dizzy Little Piggy

    Dizzy Little Piggy OINK OINK

    And no balance in the inner ears, no problem because you still have balance in the eyes and in the feet. Just don't walk in the dark.

    Piggy
     

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