MenieresInfo.com Blog

Click here to read a a GREAT message from GREAT Meniere’s Disease patient Annie Coleman at her website anniecoleman.com.

Here are just some of the many important things to be found in her message, things that make her a GREAT patient:

• She became informed!
• She changed doctors when it made sense.
• She went to a neurotologist (specialty most specific to Meniere’s Disease).
• She approached treatment logically, starting with the least invasive.
• She is aware that improvement following treatment may mean that the treatment is responsible, but considers the possibility of coincidental temporary remission.
• She knows that when one treatment doesn’t improve symptoms, the next treatment may, and that one never knows which treatment may be the charm until one tries it.
• She has determination — she continues to explore ways to improve her symptoms.  She reacts to disappointment not with despair but with progression in treatment options.
• She continues with her life, yet adapting to the demands of her symptoms.  She did the things that she could and adapted to the things that she couldn’t do.
• She is a realist and she is an optimist, proving that these two views can coexist.

We are grateful to Annie for posting this GREAT message, and we wish her well.

How do doctors think?  Don’t we wish we knew?  There may be help at hand!

Dr. Jerome Groopman’s new book, “How Doctors Think,” describes how doctors hit — and miss — the correct diagnosis, and includes Groopman’s own errors!  (Bless any doctor who can admit error!)

The New York Times book review of “How Doctors Think,” by Michael Crichton, M.D., can be found here.

To Google more information, click here.

As almost all Meniere’s Disease patients know, just getting the correct diagnosis can be an excruciatingly traumatic process.  Many of us are told that we are “just plain nuts” until we finally find the right doctor with the right knowledge, the right diagnostic equipment, and the right analysis who can finally come to a reasonable conclusion.  More than half of our problem is just getting a doctor to listen to us for more than one sentence.

And diagnosis is just the beginning!  Then comes the search for the treatment, or combination of treatments, that works best for each of us individually.  Many of our doctors are just not knowledgeable about possible treatments.

This book has gotten many rave reviews.  To the extent that it can help us understand those whom we need to understand us, the price will be well worth paying.

[Updated March 3, 2007]
[Revised February 24, 2007]
[Revised February 17, 2007]

Question

For almost twenty years, I have had all the symptoms of Meniere’s Disease, including “brain fog.”  All the while, my doctors said my tests were fine and so I must be fine, and that my symptoms must be manifestations of stress.  (Or else I was just plain nuts.)

Finally, the symptoms got so bad that I could not do my job and I went back to the doctor and was told that I “may” have Meniere’s Disease. He said there was nothing he could do, and I should see some other doctor.  Without a job, my only health care resource was Medi-Cal, which is what Medicaid is called in California.  However, it was almost impossible to find another doctor in my area who accepted Medi-Cal’s low payments.  It took a lot of work to eventually find one more doctor in my area who would take Medi-Cal.  He prescribed meclizine hydrochloride (Antivert), in case I had Meniere’s Disease, but the Antivert was not helpful to me.  I’ve had more tests done, including X-rays, blood tests, etc.  I had an MRI scan, but it turned out to be wrong because it was not conducted with “contrast.”  I waited a long time to be rescheduled for an MRI scan with contrast.  I later found out that Medi-Cal twice turned down the second MRI scan, but my doctor “forgot” to tell me.  Then I applied for a third time, and I was just recently turned down for a third time.  Each request for approval of an MRI somehow takes Medi-Cal four months to process (and reject).

It’s now been two years since I went back to the doctor, and I have gotten nowhere. My doctor told me, “You are a Medi-Cal patient. I make thirteen cents on the dollar to see you. You are just not a priority when you are getting treatment under Medi-Cal.” 

I have been denied disability benefits twice, due to not being “disabled enough to prevent me from doing my former occupation,” regardless of the fact that my symptoms are now constant and are keeping me from getting any kind of job.  My Medi-Cal disability physical examination lasted about four minutes and was so brief that I was not at all surprised to hear that the doctor judged me to be in “good health.” I have been told that the only way to get state disability insurance approved is to hire a lawyer. A lawyer told me that I need to have a doctor sign a form saying I am disabled.  However, even with the history above, it seems that no doctor who accepts Medi-Cal is brave enough to actually put in writing to Medi-Cal what the doctor tells me in person. Without a doctor willing to sign this form, I will eventually lose my home and all I own. Not to mention that I still do not know what is wrong with me, since Meniere’s Disease is still only a speculation.

Do you have any ideas?

Answer

Health care in the U.S. leaves a lot to be desired.  It can be good for those who are well-insured and who have a visible and measurable disorder, like a tumor or even HIV.  It really sucks for both the insured and uninsured who, like us, have invisible illnesses.  Invisible illnesses always bring out the worst in bosses, friends, relatives, and doctors, who suspect us of being shirkers or of being “just plain nuts.”

It can be very difficult for anyone to find a local doctor who knows anything about Meniere’s Disease, let alone a local doctor who knows anything about Meniere’s Disease AND who accepts Medicaid (or, as in your case, living in California, Medi-Cal).  Patients often attach undue importance to the proximity of a doctor.  Our perspective is that proximity alone should not be a factor.  Of course, money is always a factor and that translates into proximity, but that is a different issue.  Even without the Medicaid/Medi-Cal problem, it may be necessary for some patients to travel, even out of state, to get a proper diagnosis and treatment plan. A local doctor can then oversee the treatment plan.  (Click here.)

It is hard to sort out our feelings about the doctors you have seen.  On one hand, candor is a virtue.  On the other hand, so is compassion.  It is tempting to say that a doctor who expresses the 13 cents on the dollar crap and who tells you that you are just not a priority simply shouldn’t be taking Medi-Cal patients.  On the other hand, thank goodness that the doctor does take Medi-Cal patients.  We think that doctors should be able to recoup lost wages, tuition, and expenses while they attended college and medical school.  We are fine with doctors who choose to become wealthy in our democratic capitalist society.  We would just hope that some doctors are actually motivated to help people, even people who are constrained by Medi-Cal and Medicaid, and can actually respect poor patients as well as rich patients.

Your logic seems to be:  (1) You have not been diagnosed.  (2) Since you have not been diagnosed, you have not been treated for a diagnosed disorder or condition.  (3) You have been prescribed one form of treatment for Meniere’s Disease, Antivert, which was not helpful.  (4) You are unable to get the treatment that you deserve because of the failings of Medi-Cal.  (5) You have become disabled due to your symptoms (which may or may not be Meniere’s Disease), which are untreated because you are unable to get treatment through Medi-Cal.  (6) You believe that the only choice you have left is to draw disability benefits (although you would rather be treated and working as you were before your symptoms overwhelmed you), and you are looking for a doctor who will risk the wrath of Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below) by truthfully reporting in writing your disability.  In short, you have given up all hope of getting the diagnosis and treatment that you need and that you deserve, all because of the failings of Medi-Cal.  All of this is quite understandable.

However, our logic runs this way:  (1) You have not been diagnosed.  (2) You may or may not have Meniere’s disease.  (3) You need a diagnosis.  (4)  If you have something that is not Meniere’s Disease, you need to be treated for that disorder or condition and become able to return to your former occupation or some other occupation, if possible.  (5) If you have Meniere’s Disease, although Meniere’s Disease is incurable, there are MANY possible treatments for Meniere’s Disease, of which you have experienced but one.  (6) If you have Meniere’s Disease, you need to experience, through (unfortunately) trial and error, the various treatments to see which treatment, or combination of treatments, may work best for you and return you to your former occupation or some other occupation, if possible.  (7) If you have Meniere’s Disease and it turns out to be intractable (untreatable) and you remain disabled, then you need to have a specialized doctor who is well-acquainted with Meniere’s Disease who can substantiate your disability without fear of reprisal from Medi-Cal (or whomever — we have no knowledge of “Medi-Cal disability” — see below).  (8) In order to accomplish all of this, you must first somehow find a way to get the treatment that you deserve under Medi-Cal, including the MRI scan with contrast that is necessary to further a differential diagnosis of your symptoms.  In short, we encourage you to persist in finding a way, even an imperfect way, of getting the diagnosis that you deserve and the treatment that you deserve.  Easy for us to say, we know.  You have been down many dead end roads and you have earned the right to be discouraged.  That said, we who are not doctors and we who are no smarter than you still want to try to figure out a way for you to succeed.  Please forgive us.
 
Many disorders and conditions can produce the symptoms you describe.  (Click here.)  As you no doubt already know, you need a “differential diagnosis” to determine which one of the many disorders and conditions is the reason for YOUR symptoms.  (Click here.)  There is no test for Meniere’s Disease.  Meniere’s Disease is diagnosed based upon a patient’s history and diagnostic tests for all other possible disorders and conditions, and if nothing else is determined to be the cause of your symptoms, then Meniere’s Disease is the usual diagnosis.  An MRI scan of the brain is necessary to test for and either establish or rule out some of these disorders and conditions; for example, acoustic neuroma and multiple sclerosis.  Without a proper MRI scan, you are essentially undiagnosed.  Therefore, a proper MRI scan is absolutely necessary for a diagnosis of Meniere’s Disease (or to diagnose a mimic).
 
A diagnosis of Meniere’s Disease — or of any other disorder or condition that might produce the same symptoms — is tricky and should be conducted by a doctor who is very familiar with these symptoms and with the differential diagnosis of these symptoms.  That could be a diagnostician (like television’s Dr. House) or, more likely, it could be a neurotologist (also called an otoneurologist).  One might hope that a neurotologist has experience with justifying an MRI scan to Medi-Cal.  (Click here.)
 
So, your obvious next question is how do you find a neurotologist (not necessarily “local”) who accepts Medi-Cal?  Our simple answer is that we have no experience and no knowledge of this task.  You no doubt know far more about this than we do, and you no doubt have tried everything that we are about to suggest.  But that won’t stop us from trotting out whatever we can think of.

Perhaps you can go to a county hospital, public hospital medical center, or a university medical center, whether or not close to where you live, which, one would hope, would accept Medi-Cal.

For example (we will pick Southern California for this example):

• Loma Linda University Medical Center.  Some years ago, we heard of a  Meniere’s Disease patient on Medi-Cal who had a vestibular neurectomy at Loma Linda, complete with neurotologist and neurosurgeon.  (Note that “heard of” is not very reliable.)  Update:  A reader tells us that Loma Linda Medical Center does not accept Medi-Cal.
• Update:  A reader suggests that one should ask whether Arrowhead Regional Medical Center in Colton, Cal., accepts Medi-Cal.
• Update:  We suggest finding out whether Los Angeles County — University of Southern Californa (County-USC) Medical Center accepts Medi-Cal.
• University of California, Los Angeles, Medical Center.
• University of California, San Diego, Medical Center. The head neurotologist there actually did write the book.  (Click here.)

Or perhaps there is a major private clinic that is worth asking if it would accept Medi-Cal. 

For example (once again, we will pick Southern California for this example):

• House Ear Clinic, Los Angeles

With good fortune, you will be diagnosed and treated for whatever is causing your symptoms.  Meniere’s Disease is incurable but the symptoms are treatable, at least to a certain extent, in most (but not all) cases.  There are many possible treatments, and one must, through trial and error, figure out which treatment(s) works the best for that particular patient.  (Click here.)

After you are diagnosed and treated, and if you unfortunately remain disabled whether from Meniere’s Disease or from some other disorder or condition,  it is (as you know) yet another uphill battle to secure disability benefits.  You mention “state disability insurance,” and “Medi-Cal disability,” but we are sorry to say that we don’t know anything about them.  We have information on two Social Security Administration disability programs:  Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).  (Click here.)
 
A lucky few Meniere’s Disease patients succeed in getting an award of SSA disability benefits without a lawyer, but most folks seem to need a lawyer to succeed.  Finding a lawyer sooner is better than later.  The system is designed to exclude claimants, not to qualify them.  A lawyer who represents a claimant before SSA is legally bound by SSA regulations.  Under those regulations, a lawyer may only accept payment out of back benefits actually secured, and there is a maximum limitation on that.  (Click here.)  Yes, this system is fraught with inequities for both claimants and for lawyers, but that’s another issue.  With the right lawyer and the right doctor, a truly disabled claimant shouldn’t have a problem with a doctor’s fortitude in signing a disability form.  What is necessary to qualify for disability benefits are truthfulness and strict compliance with SSA’s particular requirements.  We have extracted SSA’s particular requirements for Meniere’s Disease.  (Click here.)
 
It is a legitimate strategy when one spouse is facing uninsured medical problems for the other spouse to find a different job, even at lower pay (and possibly at higher pay), and even in a different city or different state, that might provide self and spousal insurance benefits that do not exclude preexisting conditions.  Typically, state and federal government jobs provide such benefits.  Another possibility is to join a professional association that offers such health benefits (that is, obviously, if such an association exists, and if one can qualify).

It is also a legitimate strategy to move from an area without facilities for treating Meniere’s Disease to an area that has facilities for the treatment of Meniere’s Disease, even though this might require a change of jobs for one and/or for one’s spouse and the attendant trauma for one’s children.  But you get the idea, which is basically thinking outside of the so-called “box.”  Is changing jobs painful?  Sure.  Is moving out of state painful?  Sure.  Is selling one’s house painful?  Sure.  Is the alternative any better?  If it is, then fine.  If it’s not, then there is no end of pain that some of us must endure in order to prevail in the battle against Meniere’s Disease.
 
It’s clear that you have been through the proverbial mill, and that nothing so far has been easy.  It may not get any easier, but that cannot stop you from fighting the good fight.  You are smart and determined and we are sure that there is success in store for you, although we cannot predict when or at what cost.  We hope that when you succeed, you will share with us the benefit of your knowledge so that we can publish it in hopes of helping others who will follow behind you.

We wish you well.

From MenieresInfo.com (our home website):  A study published in the medical journal Archives of Otolaryngology — Head and Neck Surgery, published by the American Medical Association, reports highly encouraging results in a two-year survey of patients using the Meniett Device.  (“Archives of otolaryngology–head & neck surgery” Arch Otolaryngol Head Neck Surg. 2006 Dec;132(12):1311-6.)  (See the MenieresInfo.com Treatment Page, Meniett Section.)  The abstract is highly readable and pretty much speaks for itself.

We have yet to see a satisfactory explanation of how the Meniett Device might possibly treat Meniere’s Disease.  Still, the device seems to help some patients, some for a short time, others for a much longer time.  This study, which is not by any means a perfect study (it was “unblind,” for example) shows that some patients reported improvement for a very long time.  Others in the study dropped out for surgical interventions.

As we say, “If it helps you, it helps you, no matter what ‘it’ is.”

A reader asks:

I have had Meniere’s Disease since I was a child.  Ten years ago, when the vertigo became so bad that I could not drive, work, or sometimes even walk, I had IT (intratympanic) gentamicin treatments to stop it.  I have not experienced the spinning sensations of dizziness since then. I still feel slightly off balance, but I don’t get that whole world-revolving-around-me feeling any more. However, for the last month it seems like I am having a relapse of Meniere’s Disease, because I have frequent vomiting and upset stomach (but no spinning). My primary care doctor just keeps telling me I have a virus but I have had it since Halloween. I have had many recurring “ear infections” this year and I have been feeling horrible. Should I demand a referral to an otolaryngologist?

First, a reminder: we are patients, not doctors. Now, let’s jump to the bottom line. Every time someone asks, “Should I go to another doctor?” our answer is “yes.” So you ask, “Should I go to another doctor?” and our answer is “yes.” The question arises because the patient is not satisfied and wants to find another doctor with whom the patient will be satisfied. This strikes us as a basic right of a patient — the right to find a doctor with whom one is satisfied. Furthermore, we always recommend multiple medical opinions both for diagnosis and for treatment options — no matter what the symptoms are. Medicine is imprecise and medical opinions are just that — opinions. We recommend that one treat oneself as well as one treats one’s car. We get multiple opinions on our cars, don’t we? See: http://www.menieresinfo.com/doctors.html .

There are many types of dizziness.  The dizziness that is a symptom of Meniere’s Disease is specific and is called ”rotational vertigo” — the sensation that the world is spinning around one. In the absence of rotational vertigo, we could understand why a doctor would be reluctant to deduce Meniere’s Disease. Still, in between episodes of rotational vertigo, many patients experience varying degrees of imbalance. Nausea and vomiting are not symptoms of Meniere’s Disease. Nausea is a consequence of the symptom of rotational vertigo and vomiting is a consequence of nausea. See: http://www.menieresinfo.com/symptoms.html .

We can understand why a doctor would be reluctant to deduce Meniere’s Disease on the basis of nausea and vomiting in the absence of rotational vertigo or, said differently, in the absence of sufficient dizziness to cause the nausea that causes the vomiting. But we can understand why you would suspect Meniere’s Disease in view of your history.

You mention an “otolaryngologist” (an “ENT” (ear, nose, and throat) doctor). The medical specialty most closely associated with the diagnosis and treatment of Meniere’s Disease is a “neurotologist” (also known as an “otoneurologist”) — a doctor who specializes in the diagnosis and treatment of diseases and conditions of the ear, the inner ear, AND of the 8th cranial nerve (the nerve that is involved with the symptoms of Meniere’s Disease). See: http://www.menieresinfo.com/doctors.html.

IT (intratympanic) gentamicin treatment works differently for each patient. Sometimes it works; sometimes it doesn’t. There are many different variations (protocols) of IT gentamicin treatment.  IT gentamicin treatment can have different purposes – for example, to destroy the tiny hairs that are the vestibular function nerve endings of the 8th cranial nerve, or to destroy the “dark cells” (yes, that’s what they’re called) that produce endolymphatic fluid. Some patients find that vertigo is reduced, and some of those patients find those results to be temporary and of varying durations. See: http://www.menieresinfo.com/treatment.html .

We’d put your situation this way. You’ve been sick and puking for nearly a month and your doctor isn’t helping you. Should you see another doctor? Absolutely! You’ve had recurring ear infections over the course of a year and your doctor doesn’t seem to know why or how to stop them. Should you see another doctor? Absolutely! We believe that one cannot go wrong with second/ third/ fourth/ etc. medical opinions.

Please let us know how it turns out. We wish you well.

A patient writes:

I have had several Meniere’s attacks in my life, the most recent being over 10 years ago.  As a result, I had slight hearing loss in my right ear.  In January 2006, I had major surgery, after which I was given an ototoxic “loop” diuretic.  The next day after being given the loop diuretic, I found that I had lost all hearing in my left ear.  After several weeks, much of my hearing in the left ear has returned, but hearing remains distorted and I sometimes have a sensation of fullness.  After testing, my doctor found no evidence of Meniere’s disease in the left ear, but confirmed evidence of Meniere’s Disease in the right ear in the past.  He couldn’t say whether the ototoxic loop diuretic or Meniere’s Disease caused the sudden hearing loss in my left ear.  Can Meniere’s Disease cause sudden hearing loss?  My doctor recommended a low salt diet and avoidance of eating cheese.  I see no reference to cheese on any of the Meniere’s websites. Is it known as a frequent trigger? Should I go to a Meniere’s Disease specialist to better determine if the damage to left ear is from the ototoxic loop diuretic or from Meniere’s? Could this determination make a difference in the prognosis which at this time is to wait to see if it goes away?

Meniere’s Disease can cause sudden hearing loss (SHL) but it doesn’t happen often.  You can research this on Google here.

The logical reason why cheese might not be mentioned on any of the Meniere’s Disease websites is that it is not ”known as a frequent trigger.”  In fact, it isn’t. However, cheese contains sodium, which is at odds with your low salt diet (which is really a low sodium diet).  Sodium is known to be a trigger in some, but not all, patients (click here).  You are really asking, “Why did my doctor tell me to avoid cheese?”  But why ask us?  If you have a question about what you were told by your doctor, our advice is to ask your doctor.  It is simply not possible for us to know why your doctor or anyone else said anything about anything.  Our answer to “Why did he tell me that?” is always “We don’t know.”

Our answer to the question “Should I see another doctor?” is always YES.

“Prognosis” is the course of a disease.  Your “prognosis” is not “wait to see if it goes away.”  That is your “treatment.”  If you are asking whether one doctor might have a different opinion from an other doctor, both for diagnosis and for treatment options, the answer is YES.

What you are really saying through all of this is that you lack confidence in your doctor, to which we always say, “see another doctor.”

Via our free subscription to PubMed alerts, we were notified today that the following articles have been added to PubMed.  For tips on how to obtain the full text of these articles, see the MenieresInfo.com Research Page.

• Differentiation of Meniere’s disease and migraine-associated dizziness: a review.
• Electrocochleography in the evaluation of patients with Meniere’s disease/endolymphatic hydrops.
• An update on the surgical treatment of Meniere’s diseases.
• Evaluating treatments for Meniere’s disease: controversies surrounding placebo control.
• Meniere’s disease review 2005.
• Problems and solutions for fitting amplification to patients with Meniere’s disease.
• P-100 in the treatment of Meniere’s disease: a clinical study.
• Meniere’s disease: prevalence of contralateral ear involvement.

A reader writes to say that he has stopped taking his medicine because it makes him drowsy and asks what else he should do.

The reader should talk to his doctor and discuss whether an adjustment in the frequency and dosage of his medicine is in order.

For every medicine, there are one or more side effects.  The idea is to balance the side effects with the sought direct effect of the medicine.  Medicines such as Valium and Antivert (meclizine hydrochloride) are intended to sedate the vestibular system to reduce the frequency, duration, and intensity of attacks of rotational vertgo.  Naturally, the side effect of any vestibular sedative will be drowsiness to a greater or lesser degree.  Also naturally, each patient has different tolerances for various side effects.  Each patient must decide whether one prefers vertigo attacks to drowsiness, when medicines that cause drowsiness are also medicines that improve rotational vertigo.

It may be that the doctor will recommend reducing one’s dosage so that one takes only as much medicine as will supress the vertigo while allowing the patient to perform reasonably well.  If one can sense an impending attack, perhaps the doctor will recommend that one only take the medicine when one so senses an impending attack.  Perhaps other medicines or other treatments are more appropriate.  These are issues to discuss with one’s doctor.  See the MenieresInfo.com Treatment Page.

A reader writes that his doctors aren’t helping him and asks for our suggestions for treatment.

We are patients, not doctors, so our suggestion is that this reader should keep on seeing doctors until he finds one who inspires his confidence.  There is no getting around this.

A reader asks:

My doctor recommends endolymphatic sac surgery of some sort on one of my ears.  How can he or I tell which ear is causing the problem?

You should discuss this with your doctor and ask how the doctor determined which ear to operate on.  One might expect that ear to be the one that has hearing loss, aural fullness, and tinnitus.

A reader asks:

I recently was diagnosed with Meniere’s Disease, and I am on a low-sodium, no caffeine, and no alcohol diet.  I am miserable.  The low-sodium diet I can deal with, but no caffeine or alcohol?  I’ve read that the low-sodium diet is important, but received conflicting views on the necessity to abstain from caffeine and alcohol.  Is a glass of wine or a piece of chocolate no more than once a week going to bring back my symptoms?

It is common for doctors to advise patients to abstain from sodium, caffeine, and alcohol (and tobacco) (click here), as these substances are known to trigger the symptoms of Meniere’s Disease in many, but not all, patients.  Note “but not all patients.”  Only you can determine whether these substances will trigger your symptoms and, if so, to what degree.  Only you can determine whether you are more miserable with symptoms or more miserable without sodium, caffeine, and alcohol.  Most patients who suffer from bouts of severe vertigo will find the abstinence a small price to pay, but there are others, perhaps yourself, who prefer the vertigo.  We suggest that you discuss your concerns with your doctor.

A reader asks:

Are there any specific foods that you can recommend to help cure this disease?

There is no cure for Meniere’s Disease.  There are no foods known to treat the symptoms of Meniere’s Disease.  A low salt diet may help to treat the symptoms of Meniere’s Disease in some, but not all, patients.  For more information on the treatment of Meniere’s Disease, visit the MenieresInfo.com Treatment Page..

A reader asks:

I have just been diagnosed with Meniere’s Disease.  It started with one attack every week for the first five weeks. The attacks last about fourteen hours. The last one was when I was driving and almost did not make it off the highway, so I have stopped driving. I have no warning of the attacks. I have changed to a low-salt diet and I have been taking medicines for the last month. I have not had a day without feeling dizzy for two months, but I have not had an attack for about four weeks. I need to go back to work, which is very stressful. I am very nervous about returning to work and about driving.  Also my employer’s short term disability insurance company says “we know you have Meniere’s Disease but this is like having the flu”; they say that I have an illness, not a disabillity.  Do you have any suggestions?  Do you find people to be understanding about this disease? Do I just start driving again?  How do I learn to lower my stress?

You seem to be sayng that your symptoms have been responsive to the low-salt diet and medicines.  If so, congratulations.  If not, visit the MenieresInfo.com Treatment Page.

About disability:  visit the MenieresInfo.com Disability Page.

About people understanding about Meniere’s Disease:  visit the MenieresInfo.com Start Page.

About driving:  you should drive only if you are not having attacks that occur without warning symptoms.  You should discuss this with your doctor.

About stress:  talk to your doctor about dealing with stress and anxiety, including medicines to help you.  We know of no Meniere’s Disease-specific methods of dealing with stress, so you might take advantage of the many resources available for dealing with stress in general.

A reader asks:

I have had dizzy spells for about 15 years, but I was diagnosed with Meniere’s Disease just one year ago. The episodes of vertigo pretty much ruin my life even though I am on all the usual medical treatments (valium, diuretic, antivert, low salt, no caffeine). I still seem to be getting worse. I have had two rounds of ear perfusion done, the latest of which took most of my hearing.  The loss of hearing is not so bad as the episodes of vertigo, which take my time away from by family, and this is just not acceptable to me.  Would you recommend surgery or should I just wait it out?

We are patients, not doctors, so we don’t give medical advice.  Your question is a good one — for you to think about yourself and for you to discuss with your family and your doctors.  You seem to appreciate the risks involved with any surgery.  No doubt you didn’t expect the hearing loss that you experienced from the intratympanic instillation and perfusion (of what, we surmise, was gentamicin) because you were told that “most” patients don’t lose “much” hearing. 

Only you can decide whether the possible alleviation of your symptoms is worth the risk of surgery.  However, there is a fairly non-invasive option that you have not mentioned:  the Meniett Device.  Like all Meniere’s Disease treatments, this device seems to work well for some patients and not at all for some other patients, with the rest of the patients falling somewhere in between. 

There is a destructive treatment with fairly low risk:  intratympanic instillation and perfusion of streptomycin or high-dose gentamicin.  This procedure is also called “chemical labyrinthectomy,” and is intended to fully destroy the balance function of the inner ear (with the consequential destruction of the hearing function as well), with a lower risk than a surgical labyrinthectomy.  Labyrinthectomy of any kind is usually reserved for patients with no functional hearing remaining.

Please let us know what you decide and how it works out.

Find out more about the Meniett Device and other treatments for Meniere’s Disease at the MenieresInfo.com Treatment Page.

__________

We received this message on May 11, 2006:

Just a quick update on my question of whether I should have surgery or wait. I have seen another specialist and I am having ear decompression surgery with mastoidectomy next week. This seems to be a better option than the other surgeries I could have and is the least invasive. I just wanted to say thanks for posting my question, it really helped me have the courage to seek another doctor’s opinion.

One can never get too many medical opinions.  Keep in mind that endolymphatic sac decompression surgery is controversial — even called “sham” surgery by some.  See this link at MenieresInfo.com.

A reader asks: 

I have been dealing with terrible almost constant vertigo due to Meniere’s Disease for 10 years. In that time, I have been through three procedures for my left ear:  (1) intratympanic (IT) gentamicin which knocked out all hearing and made more worse, then (2) a transmastoid labyrinthectomy which did nothing, and then (3) a translabyrinthine vestibular nerve section, to no avai.  Now I have symptoms in my right ear and I was diagnosed with bilateral Meniere’s Disease.  Doctors now give me two choices: right endolymphatic sac shunt/decompression/amputation or titrated intramuscular (IM) streptomycin. I am inclined take the streptomycin, although I am aware of the possibility of occillopsia and the likely resulting ataxia, but to get rid of the constant dizziness it might be worth it. I am very scared about bilateral loss of vestibular function and have seen much literature that suggests low-dose streptomycin that blunts rather than completely ablates vestibular function can avoid the worst of the side effects. What would the most reasonable option seem to be?  I really don’t want to go through another mastoidectomy and endolymphatic surgery if I’m going to end up going through IM streptomycin anyway.

IM (intramuscular) streptomycin means that the drug is administered “systemically” by injection into one’s muscles, meaning that it will affect the whole body, the whole system, including both ears.  To affect just one ear, it would be administered IT (intratympanically) (through the eardrum).  In your case, there is little significance because you have already had a surgical labyrinthectomyin one ear, which removed and therefore destroyed all hearing and balance in that ear.  However, IM streptomycin will damage or destroy whatever hearing you might have remaining in your right ear.  If you have any remaining hearing at all, and you want to keep it, you would want to avoid streptomycin.  Unless our doctors and authoritative studies convinced me otherwise, we would consider IM streptomycin to be absolutely destructive; we wouldn’t put any faith in a particular outcome for “low-dose” streptomycin.  But you have seen “much” literature to the contrary, so let your own research be your guide.

No doubt you are skeptical of IT gentamicin from your previous experience with your left ear, but if you have remaining hearing, it might be worthwhile to consider “low-dose” IT gentamicin.

However, if we understand your email correctly, you have had chemical ablation of your left inner ear by gentamicin, a surgical labyrinthectomy, AND a VNS in your left ear, and none of these treatments gave you any relief.  What a horror story!  No doubt you are concerned for the possible same outcome in your right ear.

To us, who are not doctors, your analysis seems reasonable, and the IM streptomycin would be an easier ride than another endolymphatic surgery.

But we think that the better course of action is to get additional medical opinions, as we always recommend.  That’s what we would do if we were in your shoes.  That would be a lot better than any information that we could provide.

We hope that whatever you do, the results are better than what you experienced on your left ear.

We sure do feel for you.

A reader asks:

I’ve had Meniere’s Disease for six years.  During that time, I tried a low salt diet, diuretics, Valium, Serc (from Canada), and quit caffeine.  I kept declining the various surgeries that the doctors recommended.  I came very close to surgery, but something made me stop.  Finally, I don’t know why, the episodes of vertigo just stopped, and my hearing is almost normal again.  Is this burnout?  Is it permanent?  Should all patients avoid surgery and wait for the burnout?

Nothing stops the relentless progression of Meniere’s Disease.  Some doctors believe that some patients reach the point where the Meniere’s Disease has destroyed the tiny hairs that are the ends of the balance nerve in the vestibule in the inner ear that balance function is entirely destroyed, with the result that no balance signals, rotational vertigo or otherwise, reach the brain.  This is called “burnout.”  At this point, hearing is also destroyed or mostly destroyed.  But even deafness doesn’t stop the tinnitus and aural fullness.  Not all doctors and not all patients believe in burnout.  For more information, see the MenieresInfo.com Prognosis Page section on burnout.

We have no way of knowing whether you have reached burnout — ask your doctor.  However, the fact that your hearing is so good is inconsistent with the traditional notion of burnout, in which practically the entire inner ear is destroyed by Meniere’s Disease.  What you describe sounds — to us, who are not doctors — more like a remission.  If so, there is no telling how long the remission might last before there is a relapse.

Many, perhaps most, patients never reach burnout, so a strategy of waiting for a burnout that may never or probably never will come is dubious.  Like you, many patients defer surgery as long as possible, prefering to work with less invasive treatments for as long as possible.  That is a respectable strategy.  But for some patients who are severely disabled by Meniere’s Disease and whose Meniere’s Disease is unresponsive to medical management, lifestyle changes, etc., and who have done their research and concluded that an invasive surgery such as VNS (vestibular nerve section or vestibular neurectomy) is the right choice for them, that, too, is a respectable strategy. 

A reader asks:

I was told by an ear specialist that by having vestibular nerve section (VMS) surgery, I would have to learn to walk again, and that the remaining balance nerve can never make up for the loss of balance on the side of the affected ear as a result of the surgery. I was told by another specialist that VNS surgery never results in a problem with walking and that most VNS patients are up and walking around within one week. Which is true? I don’t want to have the VNS based on what the second doctor says and then find out that the first doctor was right.

The most extreme treatment for Meniere’s Disease in terms of invasiveness is the vestibular nerve section (VNS) surgery, which is also called “vestibular neurectomy,” or VN.  The involved nerve is the 8th cranial nerve — the vestibulocochlear nerve.  This nerve begins as two branches, the vestibular branch running from the vestibule (the balance organ), and the cochlear branch running from the cochlea (the hearing organ).  The two branches join and run toward the brain as one nerve.  Near the brain, the nerve branches off again into vestibular and auditory branches.  In VNS surgery, the vestibular branch is sectioned (severed) near the brain in order to cut off the signals of imbalance that are being sent from the vestibule.  VNS surgery is usually reserved for cases where a patient’s Meniere’s Disease has not responded to less invasive treatments.  VNS is considered by some to be a last resort, and is considered by others to be the ultimate surgery for resolving the balance problems that result from Meniere’s Disease.  Read more about VNS surgery at the MenieresInfo.com Treatment Page.

Virtually every treatment for Meniere’s Disease affects each patient differently.  It is simply not possible to predict how any one patient will be affected.  When doctors say, “most patients” or even “some patients,” they are not talking about you.  They are talking about patients whose outcomes are now known.  Your outcome is not now known.  Every doctor seems to have one’s own favorite set of statistics to quote, and few seem to coincide.  The reality is that the outcome of any Meniere’s Disease surgery depends on the patient, the patient’s anatomy (we are far more different inside than most patients realize), the skill of the surgeon, the experience of the surgeon in terms of the number of these surgeries previously performed by the surgeon, the hospital in which the surgery is performed, the skills and experience of the surgical assistants, and many other factors.  Each patient seems to recover differently, as with all things Meniere’s — some better, and some worse.  This highly invasive surgery carries significant risks, as described at the link above.  Even if it rarely happens, that fact will be little comfort if you happen to be the patient whose wrong nerve was cut.  (The facial nerve looks much like the vestibulocochlear nerve in some patients.)

We suppose that some patients recover from VNS amazingly soon and that others do not ever recover well and that the remaining patients fall somewhere in between.  We are not doctors, but we think that the rosy picture painted by the second doctor is NOT what most patients will experience.  We think that most patients will benefit from vestibular rehabilitation therapy after a VNS.  Click here to see what the medical journal articles say.

But what you are really saying is that you don’t have confidence in either doctor.  We know the feeling.  We suggest that you get at least two more opinions.  We ALWAYS recommend multiple medical opinions, both for diagnosis and for treatment options.  See the MenieresInfo.com Doctors Page.

A reader writes: 

When I lived in Japan three years ago, my ear, nose, and throat doctor diagnosed me as having “Acute Low-tone Sensorineural Hearing Loss” [ALHL]. This seems to be a disease recognized only in Japan.  My impression is that it is “Meniere’s without the dizziness.” My doctor said, though, that it can develop into Meniere’s Disease.  Back then, I had only one episode of dizziness lasting 30 minutes, so that diagnosis made sense to me. My doctor in Japan prescribed four medicines: isosorbide[*] (which does not seem to be prescribed for this purpose in the U.S., and three medicines which seem to be prescribed only in Japan and Germany:  kallidinogenase (a vasodilator), adenosine triphosphate disodium, and mecobalamin. To be honest, I have no idea if this cocktail (which seems to be standard in Japan) had much of an effect. I *think* it helped reduce my sensitivity to high-pitched sounds and improve my ability to hear low-pitched sounds, but it could be that these symptoms were relieved by the low stress level that I was having while living in Japan those years.

I then moved to Boston for a year, where I told my Boston doctor of my diagnosis of “Acute Low-tone Sensorineural Hearing Loss,” but said he had never heard of it. To him, I simply had Meniere’s Disease.  I can’t remember what medicines I was given by my Boston doctor. At any rate, after six absolutely stress-free months in Boston, my symptoms virtually disappeared for a year and half.

I am now back in Japan, and for various reasons my stress levels have soared and my symptoms have come back with a vengeance.  For the past week I have been suffering from rather severe dizziness. My Japanese doctor conceded that I may have Meniere’s, but said the treatment is essentially the same, but with the addition of two anti-dizziness medicines: betahistine mesilate and difenidol hydrochloride. Since I started taking these, I have headaches and grogginess and I experience problems in concentrating.  It’s hard for me to tell whether these symptoms result from the Meniere’s Disease, or whether these symptoms are also a byproduct of the high stress that I am currently under, or whether these symptoms are side effects of the medicines.

Since Meniere’s Disease seems to be such a nebulous and elusive disease (or diseases), I thought some patients (and doctors) might like to hear how it is treated in Japan.  If you like, I will be glad to provide progress reports.

[*  Our reader means the osmotic diuretic isosorbide, not the vasodilator isosorbide nitrate, used to treat chest pain from heart disease.  See MenieresInfo.com here.]

“Acute low-tone sensorineural hearing loss” (ALHL) is more widely recognized than our reader realizes.  Research it in PubMed here and in Google here.

Of the drugs that our reader mentions, only the osmotic diuretic isosorbide seems to have a track record in PubMed (see below).  It would be interesting to see a study comparing the osmotic diuretic isosorbide to the diuretics commonly prescribed in Western countries.

We look forward to receiving this reader’s progress reports.

Research isosorbide and Meniere’s Disease at PubMed here (17 hits).
Research kallidinogenase and Meniere’s Disease at PubMed here (two hits — in 1963).
Research adenosine triphosphate disodium and Meniere’s Disease at PubMed here (no hits).
Research mecobalamin and Meniere’s Disease at PubMed here (one hit).
Research betahistine mesilate and Meniere’s Disease at PubMed here (no hits).
Research difenidol hydrochloride and Meniere’s Disease at PubMed here (no hits).

A reader asks:

I’ve been wrestling with Meniere’s Disease for four years.  I’ve had multiple MRI scans, a CT scan, many blood tests, and a battery of vestibular testing.  I’ve tried many non-invasive treatments, including the Meniett Device.  My ENT is one of the best in the area, and he contends that while I have Meniere’s Disease, there may be “something else going on.”  My gut instinct tells me that I do not have Meniere’s Disease.  I often get terrible headaches, fevers, constant post-nasal discharge on the affected side, and around the time this all started my tonsils swelled to twice their size.  Have you ever heard of these sorts of things associated with Meniere’s?  My ENT feels that the next logical choice for me are intratympanic injections of gentamicin, but I’m reluctant to undergo something so irreversible until all other options have been exhausted. On the other hand, I’m so worn down by this disease that I’m wondering if the ”gent” injections are the lesser evil, or if I should push for more testing.  It all comes back to the symptoms — I haven’t found any accounts online of anyone else with the same issues - have you?

1.  You say that you’ve tried many non-invasive treatments, including the Meniett Device, but that there other options that are not irreversible as are treatments of intratympanic gentamicin, that you are reluctant to undergo the irreversible treatment (and, we think, you mean “risky” treatment) of gentamicin.  You’ve answered your own question.  You are saying that you want to try the remaining untried less-invasive treatments before moving on to more-invasive treatments.  So talk to your doctor about the reasoning behind the recommendation of intratympanic gentamicin over the remaining untried, less-invasive, treatments and then make your own choice.  (It makes sense to us to try less-invasive treatments before more-invasive treatments.  However, some patients are so desperate for treatment that they may choose to skip to more-invasive, more-risky treatments in the hope of earlier resolution of their vertigo.  That makes sense to us, too.)  For more information on treatment, visit the MenieresInfo.com Treatment Page.

2.  You essentially say that your ear, nose, and throat (ENT) doctor is “one of the best in the area.”  How in the world would you know this?  If you did know this, wouldn’t you go to THE best in the area?  Is “one of the best” ENT doctors equivalent to “one of the best” neuro-otologists?  “One of the best” Meniere’s Disease specialists?  We are always puzzled by claims of “the best” or “one of the best” when it comes to doctors.  Most patients have no idea what that means or how to logically come to such a conclusion.  But what you are really saying at the bottom line is that you do not trust your diagnosis.  We understand.  That is why we PREACH ad nauseum to get multiple medical opinions, both for diagnosis AND for treatment options.  See the MenieresInfo.com Doctors Page.

3.  You believe that your symptoms don’t match the symptoms of Meniere’s Disease.  There are four “classic” symptoms of Meniere’s Disease, and all four are fluctuating, episodic, and progressive:  rotational vertigo (as opposed to “dizziness”), hearing loss, tinnitus, and aural fullness (a sense of pressure when there is no pressure).  See the MenieresInfo.com Symptoms Page.  However, there are many disorders that have these same symptoms.  A patient with these symptoms has to undergo a “differential diagnosis” to figure out which disorder is causing the symptoms.  A patient has to be tested for all disorders that may be at fault.  There is no test for Meniere’s Disease.  Therefore, when all tests for all other possible disorders are negative, a patient is said to have “Meniere’s Disease.”  See the MenieresInfo.com Diagnosis Page.  You have mentioned some, but not all, of the tests that are a part of a “differential diagnosis” of the “classic four” symptoms.  Of course, a patient can have two or more disorders at the same time.  The mere fact that a patient has more symptoms than the “classic four” of Meniere’s Disease may mean that a patient has something in addition to Meniere’s Disease.  (Or not.)  The key to resolving your belief, however, is additional medical opinions.

A reader asks:

My doctor has recommended intratympanic instillation and perfusion of gentamicin as treatment for my Meniere’s Disease. However, he cannot give me any information as to how long imbalance, nausea, etc., continues after this therapy.  What can you tell me?

Like all treatments for Meniere’s Disease, “gent” works well for some patients, not at all for other patients, and somewhere in between those two extremes for the rest of the patients.  To research “gent” at PubMed and read what the published studies say, click here.  (To research other topics using preformatted search requests, go to the MenieresInfo.com Research Page.)

There are many protocols for “gent” treatment.  Some protocols are for more potent gentamicin to be administered in larger quanties over shorter intervals and with fewer administrations.  Other protocols are quite the opposite, and then there are protocols that fall between those two extremes.

Then there is the intended purpose of “gent.”  One purpose would be to destroy the so-called “dark cells” that produce endolymphatic fluid, an excess of which is thought by many to be the mechanical function behind the symptoms of Meniere’s Disease.  Another purpose would be to destroy the tiny hairs that are the nerve endings for the vestibular branch of the cochleo-vestibular nerve in order to prevent signals of rotational vertigo from leaving the inner ear and reaching the brain.  The purpose would influence the choice of protocol.

You don’t mention side effects, but one possible side effect of “gent” is hearing loss.  When you are reading the studies at PubMed, you will want to consider the risks and side effects of each protocol, including hearing loss.

You can read more about intratympanic instillation and perfusion of gentamicin, and other treatments for Meniere’s Disease, at the MenieresInfo.com Treatment Page.

A reader asks:

I was diagnosed with Meniere’s Disease 25 years ago.  I read in my vast research of the disease that exercise is good for Meniere’s Disease because it increases circulation. A year ago, I started doing fairly energetic aerobic exercises.  [The reader doesn’t state the results of thr exercised.]  Recently, the tinnitus has accelerated and the exercise seems to intensify the noise level.  Am I doing the wrong kind of exercise?

We know of no authoritative source for the proposition that aerobic exercise will or can either improve or intensify the symptoms of Meniere’s Disease.  We find nothing in PubMed that supports that proposition.  Click here.  Note that the term “exercise” in the results appears in the context of vestibular rehabilitation exercises rather than aerobic or cardiovascular exercises.  We recommend that you discuss this issue with your doctor.

For information on the treatment of Meniere’s Disease, visit the MenieresInfo.com Treatment Page.

A reader asks:

I am a graduate student with Meniere’s Disease. My problem is that I can’t work as hard as I need to, because I get really tired. The department that I major in at school has been really kind to me, but I still can’t handle my studies well. I just don’t know what to do. I don’t even have confidence that I will ever catch up to my fellow graduate students.  I don’t think I can ask for more accommodations for my Meniere’s Disease from the dean.  What can I do?

About school.  You can ask for the same accommodations as any other severely ill student, such as students with multiple sclerosis (MS), attention deficit hyperactive disorder (ADHD), leukemia, ovarian cancer, and any other serious illness.  However, we know the feeling.  When people are not openly accusing us of shirking, they are wondering whether we are shirking, and one never knows when they will turn on us.  See the MenieresInfo.com Start Page and Disability Page.

No doubt some of what you are feeling is anxiety that the stress and fatigue will bring on an attack of vertigo.  Anxiety is not a symptom of Meniere’s Disease but, for many patients, it is a consequence of the symptoms of Meniere’s Disease.  If the fear of vertigo is greater than the likelihood of vertigo, there are anti-anxiety drugs to consider, although they are not without side effects that must be weighed.  Talk to your doctor.  Of course, if you fear vertigo, your fear may be well-grounded because of frequent vertigo attacks, and that is a different situation.

Depression is a common consequence of the symptoms of Meniere’s Disease.  Depression can manifest as fatigue.  This is something else to discuss with your doctor.

Talk to your doctor and get multiple medical opinions about diagnosis and treatment options.  We are fans of multiple medical opinions.  No doubt there are possible treatments that you have yet to explore.  Any one treatment may or may not help you in particular, but it’s worth exploring them to see which treatment works best for you.

The truth of the matter is that Meniere’s Disease can be so severe for some patients in your circumstance that a short term or long term withdrawal from school might become necessary.  However, we hope that for you that does not become necessary.

A reader asks:

What drugs are contraindicated with Meniere’s Disease?

We haven’t seen any authoritative listing, comprehensive or otherwise, of drugs that are *always* contraindicated with Meniere’s Disease. (Remember that the cause of Meniere’s Disease is unknown.) Of course, we haven’t seen everything.

The better answer is to ask your Meniere’s Disease doctor about any drug that has been prescribed by any other doctor and whether it will adversely affect your Meniere’s Disease or adversely interact with any drug that your Meniere’s Disease doctor has prescribed.

Some substances are known to trigger or exacerbate the symptoms of Meniere’s Disease in *some* patients, such as caffeine, nicotine, and salt. Therefore, initial treatment will usually include avoidance of these triggers. Other patients find that they are not affected by these substances.

Some substances are known to be “ototoxic” to a greater or lesser degree. “Ototoxic” means toxic to the ear, either by impairing balance, damaging hearing, or inducing tinnitus. We’ve not seen anything authoritative that indicates that Meniere’s Disease patients are any more sensitive to these substances than anyone else, but, as we always say, we’ve not seen everything. (Note that exposure to loud sound can also damage one’s hearing.) On the other hand, having already suffered the effects of Meniere’s Disease, one might want to reduce any controllable exposure to anything that might further worsen one’s condition, no matter how remote the chances.

The bottom line: talk to your doctor.

A reader asks:

I have been suffering Meniere’s Disease for three years. I went on a diet a year ago to lose some weight, and eventually lost about 25 pounds. Since then, I haven’t had a significant attack, I’ve been able to tolerate more salt in my diet, and I stopped taking diuretics. Can weight loss reduce the symptoms of Meniere’s Disease?

To search PubMed, click here. We didn’t find any articles on this subject one way or the other.

Can weight loss reduce excess endolymphatic fluid that is the prevailing (but not the only) theory of Meniere’s Disease? Dunno.

Can weight loss improve general health, both physical and mental, thereby reducing stress and improving the symptoms of Meniere’s Disease? Our sheer speculation in the absence of evidence one way or the other is, “sure.”

Could the improved symptoms be a coincidental fluctuation that is common with Meniere’s Disease or a temporary remission? That is always possible, given the fluctuating nature of the disease. One never knows.

But nothing succeeds like success and if it works for you, it works for you.

Glad to hear that you are doing better.

As always, we suggest that one talk to one’s doctor and get multiple medical opinions, both for diagnosis and for treatment options.

A reader asks:

I had unilateral Meniere’s Disease for five years, and have recently become bilateral. I have learned to manage the vertigo over time. My primary concern now is the preservation of my hearing. A recent loss of hearing in my previously uninvolved ear has forced me to get a hearing aid for the first time. What can be done to specifically preserve hearing, apart from the usual treatments for vertigo?

There are many possible treatments for Meniere’s Disease. See the MenieresInfo.com Treatment Page. As this reader implies, treatments for Meniere’s Disease are usually aimed at relieving vertigo. The vast majority of patients find that vertigo is their most severe problem, but some, like this reader, have vertigo under control and for them their greater concern is preserving hearing. Of course, none of the symptoms of Meniere’s Disease (fluctuating rotational vertigo, hearing loss, aural fullness, and tinnitus) is pleasant. We would all like to be able to reduce all of the symptoms. That said, we all tend to prioritize our symptoms and identify the worst of them at any particular point in time.

However, many treatments, if successful, may (or may not) relieve other or even all other symptoms in addition to vertigo.

Lifestyle treatments, such as stress reduction, low-salt diets, elimination of potential triggers such as tobacco, caffeine, and alcohol, can have an effect on Meniere’s Disease overall, including all symptoms.

Diuretic drugs, such as Maxide, Diazide, and Diamox may improve Meniere’s Disease symptoms overall.

For patients whose Meniere’s Disease is responsivle to immuno-suppressant drug therapy, all symptoms may be improved.

Surgical implantation of pressure equalization tubes (PE tubes, or “grommets”) may or may not have an effect on all symptoms.

Intratympanic (transtympanic) instillation and perfusion of gentamicin, or gentamicin delivered by the Silverstein microwick or the Arenberg round window micro catheter, when specifically intended to ablate (destroy) the so-called “dark cells” that produce endolymph, if successful, might affect all symptoms. However, hearing loss is a risk of this treatment.

Endolymphatic sac surgery to reduce the volume of endolymphatic fluid, if successful, might or might not affect all symptoms. Hearing loss is a risk of this treatment.

Chemical and surgical labyrithectomy, of course, destroy hearing.

Vestibular nerve section (vestibular neurectomy) is intended to eliminate vertigo attacks, without damaging remaining hearing, but hearing loss is a possible consequence of the surgery.

To evaluate the impact of any particular treatment on symptoms, vertigo or otherwise, one should read the published studies. There are links to PubMed research on the MenieresInfo.com Treatment Page and Research Page.

The key to any treatment is to research the possibilities and discuss one’s concerns and questions with one’s doctor. We always recommend multiple medical opinions, both for diagnosis and for treatment options.

A reader tells us:

I had two injections of gentamicin during the first two weeks of November [2005]. I’ve been so sick and miserable since that I wish I hadn’t gotten them. I have since had a total loss of balance. I need to use a cane just to walk. Walking in the dark or driving at night is out of the question. I’m pretty helpless right now. I wear a neck brace to stabilize my head to be able to do anything at all. I never expected anything like this. The shots were supposed to help. I hope I improve soon, but I’m really getting worried.

This may or may not be the same patient who contacted us earlier (click here); for our comment, we will assume that it is the same patient in both messages. The patient didn’t say in either message how the gentamicin was injected, but for our comment, we will assume that the injections were intratympanic.

We repeat our original recommendation:

We suggest that this patient talk to one’s doctor AND get additional medical opinions. We always recommend multiple medical opinions. Once cannot go wrong with multiple medical opinions.

Not to be snarky, but we wonder why this patient is writing to us instead of seeing one’s own doctor AND getting additional medical opinions.

From the sketchy information provided, it seems to us that this patient didn’t have a clear understanding of the purpose of the injections or of the risks involved. We wonder whether this patient had an understanding of this doctor’s experience with this treatment. We doubt that this patient researched this treatment beforehand at the MDIC or at PubMed.

Even assuming that the patient received transtympanic injections of gentamicin, there are three possible goals in this treatment, each with different levels of toxicity.

This is called “chemical labyrinthectomy.”

Each of these treatments involves risk — low risk, but risk, nonetheless. “Low risk” is in the eyes of the beholder and is not “no risk,” and when a patient agrees to any medical procedure, the patient is accepting a degree of risk.

We preach ad nauseum that patients should get multiple medical opinions, both for diagnosis and for treatment options, and that they should become their own case managers and research, direct, and accept responsbility for their own treatment.

This patient is describing symptoms that could either be unintended (but possible) consequences of some gentamicin treatments, or known and accepted consequences of chemical labyrinthectomy, which would anticipate vestibular rehabilitation.

We are not doctors and we have no idea of what is going on with this patient. We repeat our original recommendation:

We suggest that this patient talk to one’s doctor AND get additional medical opinions. We always recommend multiple medical opinions. Once cannot go wrong with multiple medical opinions.

In any event, there is a lesson here to be learned by well-intentioned patients who recommend procedures to other patients on the basis of their own success with those procedures without understanding the risks involved and the fact that every patient will not be so fortunate. In our view, “It worked well for me” is not a sufficient basis for implying that “it will work just as well for you.”

Update December 13, 2005: See this post.

A reader asks:

I had two injections in two weeks. Now I am totally helpless — I cannot even walk. Had I known that the treatment would have this result, I would not have gotten the treatment. Is this normal?

Our reader is experiencing fear, betrayal, despair, and depression. We understand. We suggest that this patient talk to one’s doctor AND get additional medical opinions. We always recommend multiple medical opinions. Once cannot go wrong with multiple medical opinions.

Our reader doesn’t tell us what type of injections (intratympanic, intravenous, or intramuscular) one received, nor does the patient tell us the name of the drug that was injected. That makes it hard to comment further.

In general, Meniere’s Disease and its treatment are extremely variable, and, at least in our view, there is nothing about either that is “normal.”

Complications vary from patient to patient, from treatment to treatment, and from doctor to doctor. There is no universal table of risks that applies to all situations. Every treatment has a risk, and since most of us need treatment, one must evaluate the risks and figure out what degree of risk one is willing to accept. Doctors tend to mimimize risks. Patients who have not experienced difficulty with their treatment tend to champion their treatment and pooh-pooh the risks; they think that because they didn’t have a problem, no one else will have a problem. However, the truth of the matter is that there are always risks with every treatment. Let’s say the odds of a problem are one in 200. If you are the only patient out of 200 who experiences the problem, it’s a BIG problem for you (writing from experience, here).

Some of us will be comfortable with surgical treatment, even including general anesthesia. Others will not be so comfortable with surgery and will prefer to explore lifestyle and medical options before considering surgical options.

Patients would do well to ask their doctor: “What are the risks of this treatment?” Patients would also do well to research the proposed treatment before committing to the proposed treatment. A good place to become educated about Meniere’s Disease and its treatments is the MDIC (Meniere’s Disease Information Center) at www.MenieresInfo.com, especially the MDIC Treatment Page here and the MDIC Research Page here, where there are links to research in medical journals at PubMed.

Most of us will conclude that whatever we experience shortly after treatment is due to the treatment. If we get better after treatment, we credit the treatment. If we get worse after treatment, we blame the treatment. However, as all patients know, Meniere’s Disease fluctuates, getting somewhat better and somewhat worse from time to time. It is always possible that one experienced a fluctuation, either for the better or for the worse, coincidentally, after treatment. It is hard to attribute anything that happens to one patient to one particular treatment.

That is why studies are not conducted on just one patient — they are conducted on multiple patients, “double blind.” “Double blind” studies employ two groups of patients. One patient receives the treatment under study. The other group receives fake (placebo) treatment and is called the “control” group. “Double blind” means that neither the patients NOR the doctors know which patients are in the group that received the treatment under study and which patients are in the control group. In all control groups in all studies, there are usually some patients who get better (despite the “fake” treatment) and some patients who get worse. The results of the group receiving the treatment under study are compared to the results of the control group to determine whether the results are significantly different — for better or for worse. Usually there are patients in both groups who experience side effects of some sort. That’s the way medicine is — there are few absolutes, just considered risks and judgments.

For more information about what you can do about your Meniere’s Disease, visit the MDIC Start Page here. We recommend that each patient become one’s own case management expert.

The MDIC (Meniere’s Disease Information Center) (www.MenieresInfo.com) has created and posted a graphic to illustrate intratympanic (transtympanic) instillation and perfusion of drugs (usually gentamicin or dexamethasone or, possibly, streptomycin). The graphic illustrates the sites of instillation (the eardrum (tympanic membrane)) and perfusion (the round window). View the graphic here.

The MDIC (Meniere’s Disease Information Center) (www.MenieresInfo.com) has created and posted a graphic to illustrate the 8th Cranial (Vestibulocochlear) Nerve and its vestibular and cochlear branches. An important feature of this graphic is a pointer to the site where vestibular nerve section (VNS) (also called vestibular neurectomy (VN)) surgery occurs. An understanding of 8th Cranial Nerve anatomy is necessary to appreciate VNS (VN) surgery. View the graphic here.

A new entry at the MDIC (Meniere’s Disease Information Center) discusses the use of the osmotic diuretic isosorbide in the treatment of Meniere’s Disease. The entry distinguishes the osmotic diuretic isosorbide from the vasodilator isosorbide dinitrate, which is used to treat angina pectoris (chest pain due to heart disease); they are two different drugs. It also points out that while studies on isosorbide use in Japan date back over 20 years, there are other diuretics that are commonly used in the U.S.

A reader asks:

Can you address the benefits of gentamicin treatments for Meniere’s Disease?

We presume that you mean intratympanic instillation and perfusion of gentamicin. Click here to read about intratympanic instillation and perfusion in general at the MDIC (Meniere’s Disease Information Center). Click here to read about intratympanic gentamicin treatment at the MDIC. Together, these links to the MDIC are fairly comprehensive.

We presume that by “benefits” you mean benefits compared to surgical labyrinthectomy and vestibular neurectomy (vestibular nerve section (VNS)).

The purpose of intratympanic instillation and perfusion of gentamicin is to treat the symptom of vertigo that results from Meniere’s Disease. “Intratympanic instillation” means instilled “through the eardrum.” In other words, the gentamicin is injected through the eardrum into the middle ear (not the inner ear).

“Gent” is technically surgery because a hole is made in the tympanic membrane (the eardrum). This can be done by merely pushing a hypodermic-type needle through the membrane, by nicking the membrane with a small knife or scalpel, or by burning a hole in the membrance using a laser. But this is very low risk surgery. (”Low risk” does not mean “no risk,” though.) Usually the only anesthesia is a local, Novocain-like, anesthetic sprayed or swabbed onto the ear drum. General anesthesia is not usually (”not usually” does not mean “never”) used for this purpose. The procedure is almost always out-patient, and is often performed in a doctor’s office. Compared to “real” surgery, the cost is very low.

Set into a niche in the lower part of the bony wall that separates the middle ear from the inner ear is a membrane called the “round window.” Once the gentamicin is injected through the ear drum into the middle ear, the objective is to get it to settle in the niche over the round window and let gravity help it to perfuse through the membrane into the inner ear. This is accomplished by having the patient lie on the “good ear” with the “bad ear” skywards, allowing the gentamicin to settle into the round window niche. (Note that the gentamicin is not injected into the inner ear.)

Gentamicin is an antibiotic, but for this purpose its antibiotic properties are unimportant. Gentamicin also happens to be ototoxic — it damages the hearing and vestibular functions of the inner ear. It is an “ear poison.”

At lower strengths, there are two possible objectives, as described at the links to the MDIC above. One possible objective is to damage the tiny hairs (that are *not* “cilia,” by the way) that are at the endings of the vestibular branch of the 8th cranial (vestibulocochlear) nerve. These tiny ears convey balance signals through the nerve to the brain. The theory is that these tiny hairs, already damaged by Meniere’s Disease, are sending faulty balance signals to the brain, and that if they are further damaged enough, there will be fewer or *no* signals at all sent to the brain, not even faulty signals that result in vertigo.

The other possible objective is to damage the so-called dark cells that produce endolymph (one of two inner ear fluids, the other being perilymph), thereby reducing the amount of endolymph in the inner ear. The current favored theory about Meniere’s Disease is that it results from excess endolymph in the inner ear, either from over-production (too much is produced) or under-resorption (too little is resorbed in the endolymphatic sac).

The doctor may seek either or both of these possible objectives. There are various protocols for accomplishing these objectives. Click here to search medical journals at PubMed.

At lower strengths, the hope is that either the tiny hairs or the dark cells will be damaged but that existing hearing will be preserved in whole or in part. However, there is always some risk of further hearing damage or even deafness. (Refer to the journal articles for the results of the various trials.)

Therefore, the benefits of gentamicin treatment at lower strengths are: low risk, low cost, convenience, possible preservation of hearing, and it might work. Might. Nothing is for sure with Meniere’s Disease. (Refer the the journal articles for the results of the various trials.)

At higher doses, as described at the links to the MDIC above, gentamicin is intended to ablate (destroy) the labyrinth (consisting of both the vestibule (balance organ) and the cochlea (hearing organ)). This is called “chemical labyrinthectomy” (where the “chemical” is gentamicin (or streptomycin, another ototoxic drug that is incidentally an antibiotic)). This is usually done only when there is little or no remaining hearing and other treatments have failed. The idea is that the total destruction of the labyrinth will “take out” everything that is sending balance signals of any kind to the brain, thereby eliminating faulty balance signals that result in vertigo. The known and accepted consequence is that not only will balance be destroyed, but whatever hearing remains will also be destroyed.

Therefore, the benefits of gentamicin treatment at higher strengths are: low risk, low cost, convenience, and it might work. Might. Nothing is for sure with Meniere’s Disease. (Refer the the journal articles for the results of the various trials.) An accepted consequence is deafness.

Compare the chemical labyrinthectomy to the surgical labyrinthectomy. A surgical labyrinthectomy accomplishes the same goal as high dosage intratympanic gentamicin by physically removing the labyrinth. Under general anesthesia, the surgeon literally cuts out the labyrinth from the inner ear, including both the vestibule and the cochlea. However, general anesthesia is always risky, and labyrinth isn’t all that accessible. Sometimes the 7th cranial (facial) nerve is damaged in the process, and there is the risk of infection, among other risks. Read about surgical labyrinthectomy at the MDIC by clicking here.

Compared to chemical labyrinthectomy, surgical labyrinthectomy carries surgical risk, is high cost, inconvenient, involves recovery from surgery, and it might work. There are no guarantees with any Meniere’s Disease treatment.

Then there is vestibular neurectomy surgery. Vestibular neurectomy (vestibular nerve section (VNS)) is surgery to section (sever) the vestibular branch of the 8th cranial (vestibulocochlear) nerve near where it connects to the brain. Once again, the objective is to block all balance signals, including faulty balance signals causing vertigo, from reaching the brain. This is very invasive intra-cranial surgery and is very risky. Read more about vestibular neurectomy and its risks at the MDIC by clicking here. This is high risk surgery, very high cost, very inconvenient, has a substantial recovery period, and it often works to reduce or eliminate vertigo. “Often” is not “always.”

The only thing certain about treating Meniere’s Disease is that the outcome is uncertain.

Read more about the various treatments of Meniere’s Disease at the MDIC by clicking here.