About Choosing a Doctor for Meniere's

When considering whether a Dr is right for you, here is what I've found in relation to Meniere's.

FIRST - don't see a regular ENT, or a general practitioner, or a neurologist as your primary Dr for Meniere's. See a NeuroToloigst. Note that T in there. A neurotologist is an Ear Nose and Throat (ENT) doctor who has had additional training to focus on balance disorders, especially those that impact the brain. A regular ENT may see 1 or 2 Meniere's cases a year and may not spend a lot of time keeping up on the latest info on the disorder. A NeuroTologist will see 70 Meniere's patients and be very up to date. Not every Neurotologist is a gem... but I've been lucky to see several terrific ones and I know good ones are out there. It may be hard to find one in some parts of the US, etc... but even if you can only see one once or twice or have a phone consult, it is worth it.

There are search tools to help look for Doctor's at http://vestibular.org/

For me, once they were SURE in my diagnosis of Meniere's Disease or in my case likely endolymphatic hydrops caused MD (which is diagnosed mostly a process of ruling out other things ) and because i am Unilateral (having the disease in only one ear).

Each of my Dr's presented treatment options to me as MY choice. They were all Meniere's experts and Neurotologists in Portland OR or Los Angeles, CA. They said:

1. Meniere's Disease is idiopathic, in other words we don't know what causes it for sure. There many very well informed theories and a lot of work being done in this space. IE, Herpes involvement, etc... But the mechanism of how it all comes together is still in question, and the community of Meniere's experts has still not coalesced around one explanation.

2. MD has no cure and is usually progressive - in some patients it progresses very slowly, in others (as in my case) the vertigo is quite extensive and destroys the organ faster... it all depends. There are many treatments available that may arrest the progress of the disease for an extended period, but usually the disease progresses eventually. (There are always exceptions). There are ways to arrest that progression or slow the occurrence of symptoms through lifestyle changes or other treatments.

3. This is really the most important: It is all about YOUR quality of life. If you want to avoid procedures that may present a risk to your hearing, or required surgery, and only try medications (antivirals, diuretics, etc...) or allergy shots or similar as your only treatment that is fine. If the vertigo is happening often enough and powerfully enough that you wish to start to destroy your ear on purpose - via gent injections or sac surgeries - even though there is risk to your hearing, then we are here for you and we will do them.

They left it up to ME to tell them when I was ready to climb the next step in things to try. Sure they gave me advice and had an opinion, but they knew my quality of life is what really mattered. Mostly they were there to EDUCATE me about my choices and what they represented.

That flexibility and willingness to listen is a hallmark of Neurotologists I've liked. The KNOW they can't cure it and they know it is often progressive, so they listen and help you grope for an answer for you and don't say absolute NO or YES necessarily, cause that doesn't always fit the nature of a chronic disorder.

Even if you are bilateral, you may have different steps or may avoid some things, but the basics of how the Dr treats you and educates you would be the same.

My Neurotologists whom I've liked very much are:


Neurotologists at Oregon Health Sciences University, Portland, OR
https://www.ohsu.edu/ent/our-team-0

Dr. Jennifer Derebery (I can't recommend her enough!), House Ear Clinic, Los Angeles, CA
http://www.houseearclinic.com/derebery

MORE BACKGROUND INFO ON THE DISEASE IS HERE

Image attached is the ladder of treatment I am familiar with that most Dr's would follow.

About Gentamicin Injections and Why people (including me) Get Them

I’ve seen a lot of questions about gentamicin injections lately, so here is little summary of my take on them.   

Here is my post on my PERSONAL experience with them and how I'm doing today in 2015:
http://menieresandme.blogspot.com/2015/04/update-on-me-and-menieres-in-early-2015.html

I also highly recommend Dr Timothy Hain’s page on gent injections at:

http://www.dizziness-and-balance.com/treatment/ttg.html

These comments are primarily directed at the UNILATERAL patient (having Menire's in only one ear).  Bilateral patients may need gent injections at some point, but it will be a different calculus on how/when.

Attached is picture of my "ladder of treatment" for unilateral MD - you can see gent is a few steps UP the ladder.

Gentamicin injections are intended to literally and purposefully DESTROY the function of your balance organ in your inner ear.  Imagine a “balance function” dial.  Well, the injections are intended to turn that dial down so that ear doesn’t send balance function signals to your brain as much or as strongly anymore.  Why would we do this?  Well, in unilateral Meniere’s Disease patients (in only one ear), the vertigo attacks are caused by the balance organ in your affected ear sending “bad” balance signals to your brain.  Your brain becomes confused at the fact that your good ear says you are sitting in a chair and your “bad” ear is saying you are moving in circles or upside down, or sideways.  The brain can’t decide what is going on so it loses control of your eyes and you have what is called Nystagmus - your eyes jerk back and forth uncontrollably.  This results in the sensation of rotational vertigo that is so debilitating to the patient.

The injections are intended to make those bad signals from that ear quieter or make them stop all together.  Our brains CAN AND WILL learn to listen to only our good ears.  It may result in less intense and more manageable attacks or if you have enough of them almost no attacks at all (but also no balance function left in that ear).

Thanks to the disorder along with a gent injection my "bad ear" only has about 4% balance function left.  My other ear is normal (I am lucky so far!).  At this point my brain has learned to ONLY listen to my good for balance, partially thanks to physical therapy (see below).  When I do have attacks my balance organ in my bad ear barely registers them and they affect me very very lightly.  If my good ear started to become affected, I'd have to deal with that, but for now I am very stable and am actually thankful that bad ear's balance function has been "turned off".

However, when we aren’t having attacks are “bad” ear can still send good signals to our brain.  So in between attacks the brain is happy with both ears.  When you have a gent injection it turns down the balance function all the time - so even if you aren’t having vertigo, after the injection you will have less function and your brain will be confused as it adjusts to this new reality of balance signals from your bad ear. (PS the disease itself can also reduce balance function through attacks).  After your balance function has been reduced you will feel unsteady and need time to have your brain adjust. 

It is imperative after gent injections you do vestibular rehabilitation physical therapy exercises at home or with a professional to help push your brain to compensate and listen more to your good ear.  Your balance has been reduced permanently on one side, the brain NEEDS help.  These exercises will be uncomfortable, it will push you, you may sweat or feel dizzy while doing them.  That is SUPPOSED TO HAPPEN.  The more you push and practice and help your brain retrain your eyes and ear the better you’ll feel a few weeks or months down the road.  If you lie in bed or avoid things or avoid leaving the house, or doing the exercises your brain will take much longer to compensate, or never will and you will not reach the point of better compensation.

Usually gent injections are provided in a low dose series with time in between to better help you manage and compensate from the balance reduction each time.

How many shots does it take?  One gent injection will likely not "do the trick" alone if you have a high amount of balance function left in your Meniere's ear. It is important to remember the goal of gent injections (which is VERY different than steroid injections) - we are literally destroying your balance organ function in the ear getting the injections so it will stop sending problem balance signals to your brain. Sometimes the function must be taken almost to zero in order to make the bad signals stop. This treatment is usually primarily advocated in patients are NOT bilateral and have one ear that is normal and has remained normal for some time.

The brain can and WILL learn to listen to only the good ear if balance is "turned off" in the bad ear. One low dose injection may take you from say, 85% function to 70% function (confirmed via VNG/ENG). 70% function for some people is still enough for you to feel a Meniere's attack and have that ear cause vertigo. For reasons not understood fully one injection may be enough for some folks. But for others additional injections may be necessary to bring the ear down to say, 25% or even 10% or less before the ear "shuts up" and leaves your brain alone and the vertigo attacks stop. This is my situation as my "bad ear " has only 5% or so balance function left and so my vertigo attacks have stopped. My brain can't "hear" them when my ear is being symptomatic. I still have Meniere's attacks (I have fullness, tinnitus and very slight dizziness) but the full on bad balance signals don't get through.

If I were go to bilateral... well, I'd have to deal with that and I likely couldn't get gent injections in my other ear. I'm 14 years in and I'm not bilateral so far, and hope to stay that way, but that doesn't always work out. So gent is a risk (in as much as you may become bilateral) but it can be a risk worth taking.

If the injections don’t work to fully reduce symptoms to a manageable point, the Dr may suggest just removing the organ all together (labyrnthectomy) or severing the nerve that carries balance messages from that ear to the brain (vestibular nerve section).

Traditional "ladder of treament" for unilateral Meniere's Disease (image):

Updated - Introduction to Meniere's Disease and Treatments

Minor updates September 2019

Hi there! This is kind of a standard message I post for newly diagnosed folks I meet on Facebook Groups or at menieres.org .  I thought I'd repeat it on my blog as a helpful post about Meniere's and finding out more about it. I’ve added links throughout that I think may be of interest. I’ve also added a few links of my own to documents and other sites throughout and at the bottom.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional unilateral Meniere's patients. I've added it at the bottom as an image.

If you are newly diagnosed with Meniere’s Disease, or have questions about whether my symptoms match the disease, there are three questions I imagine are foremost in your mind. 1. What the hell is Meniere’s Disease 2. Are they sure I have Meniere’s Disease? 3. Ok, so what are my treatment options? Let’s take these questions one at a time.

In response to question 1, Meniere’s Disease (also called MM or Morbus Menieres) is a general term describing a condition of the inner ear that causes episodic rotational vertigo, fluctuating tinnitus (ear noise), hearing loss, and ear fullness and pain. If you have traditional MM you will show all four of these symptoms at some point in the first few years you have the disease. Not all four will hit at once and some may be more common than others, but you will have all four.

If you'd prefer to read a GREAT breakdown of Meniere's written from a Dr's point of view by a world leading Meniere's specialist, with a list of references, you can do no better than Dr. T. Hain's website.  He updates it frequently. His info is more technical, but it is very thorough. Go here:
http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Dr. Hain's website is a bit old school but it is updated often and very informative.

If you have non traditional Meniere’s Disease it means you may have one or two of the four or a slight variation on the four but that your ear acts unique from the majority of Meniere’s patients. Why is it still called Meniere’s Disease? Because the other founding principal of a Meniere’s diagnosis it that your condition is idiopathic. In other words the doctor’s can’t explain the cause. Meniere’s is by definition considered to be an idiopathic disease. There are many very well informed theories on causation that may have elements of truth, but right now there is NOT an agreed on view of what exactly happens to causes Meniere's.

Because it is idiopathic there is no currently accepted way to “cure” the disease. There currently is no cure for Menieres. There are many ways that doctors try to manage the symptoms of the disease however. As to question 2, Meniere’s Disease has many mimics – or diseases that at first appear Meniere’s like, but that are actually caused by something else. Examples would be true BPPV, MS, or a tumor of the ear or brain, or autoimmune inner ear disorder. This is why many tests are required to rule out all the mimics before a Meniere’s diagnosis is given. We have to be sure that the cause really is idiopathic.

Here is a MAJOR POINT. It is imperative that you see the right kind of doctor for your disease. Meniere’s Disease should NOT be treated by just a regular ENT if it all possible. There is a type of specialist who is an expert in Meniere’s and dizziness disorders. They are ENT’s who’ve done extra training in that area and are called neuroTologists or oto-neurologists. There are lists of them in various parts of the world at http://www.vestibular.org .  Note the T in there, they are NeuroToligists. They will be board certified in NeuroTology.
More info on help choosing a Dr for Meniere's is HERE.

Finally we get to question 3, what can I do about it? Note, most of my post is directed at “traditional” MM patients, but non traditional patients can benefit from this information as well. Because Meniere’s is idiopathic, there are many theories and treatments out there. It is actually difficult to find standard agreement among doctors as to what steps should be taken with the traditional MM patient.

My own doctors have primarily been affiliated with the House Ear Clinic (see: http://www.houseearclinic.com) and House Ear Institute in Los Angeles. My doctor there was. Dr. M Jennifer Derebery House, who is one of the leading research centers on Meniere’s Disease and AIED in the country.

I have created a document that covers the traditional “ladder” of treatment that I've encountered for traditional Meniere's patients. It is attached below as an image. I can email it to you in other formats. I recommend printing this resource and looking over the treatments at menieresinfo.com and asking on the board at menieres.org or on a meniere's group on fbook about others' impressions of the treatments listed. Your treatments may be slightly different if you are non traditional or bilateral, but many of the same treatments will still apply.

Here is info on baseline medications prescribed for Meniere's patients:
http://menieresandme.blogspot.com/2015/03/understanding-baseline-medications.html

I realize I’ve already gone on too long…so I’ll cut it short. But basically, if you look over those links you will have a great deal of information to start with. I also recommend Patty Haybach’s book “Meniere’s Disease, what you need to know” available at http://www.vestibular.org/ .

There are many other topics you should ponder... Topics include traditional treatments/medications like  allergies, (SERC also known as betahistine) medication, steroids, gentamicin injections, shunt/endo sac surgery, and VNS surgery, or "non-traditional" things like nutritional supplements (including the "John of Ohio" regimen), antivirals (still up for debate), or alternative therapies.

REMEMBER! If you have any lasting balance function damage from the disease or a treatment then you should also get vestibular rehabilitation therapy from a licensed physical therapist to help your brain compensate.

http://menieresandme.blogspot.com – My Meniere’s blog
Here is a link to a post on how I personally am doing today: http://menieresandme.blogspot.com/2015/04/update-on-me-and-menieres-in-early-2015.html

I currently see Drs in Portland, OR at Oregon Health Sciences University