A reader asks:
How does Meniere’s Disease begin most commonly?
We don’t know. But it seems that there is little that is “normal†or “common†in dealing with Meniere’s Disease. Of all the many anecdotes about the onset of Meniere’s Disease, we, at least, have not seen anything in the way of consistency. We haven’t seen any study that answers the question.
Click here to search Google.
Click here to search PubMed.
A reader asks:
I’ve had Meniere’s for four years. Lately I haven’t lost any more hearing, but I’ve lost more speech discrimination. Is decreasing speech discrimination without additional hearing loss common with Meniere’s Disease?
We don’t know. But it seems that there is little that is “normal” or “common” in dealing with Meniere’s Disease. We haven’t seen any study that answers the question.
Click here to search Google.
Click here to search PubMed.
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.
There’s just no lesser way to say this without being inaccurate: HearingMojo.com is a great website. If you’re hearing impaired, as most (but not all) of us Menierians (Meniere’s Disease patients) are, a regular visit to that website is a must-do on your to-do list.
For the latest news about hearing aids, check out these posts about recent developments with the following brands:
Phonak, November 15, 2005.
Siemens, November 14, 2005.
Sonic, November 10, 2005.
Oticon, October 22, 2005.
Perhaps you are looking into cochlear implants. Do you know that consolidation leaves just three global manufacturers of cochlear implants? You would if you read this article, published on September 22, 2005.
Do you know about CapTel telephone captioning? Do you know what it is? Do you know that it was available in 32 states? We didn’t, until we read this article from September 19, 2005. Do you know that it is now available in 35 states? Not us, either, until we read this article from November 15, 2005.
Do you know that there are gizmos available to keep you from losing your valuable hearing aids during activities? You would if you read this article from October 26, 2005. Maybe you think that you don’t have a use for them. You’ll change your mind when you read this article from November, 14, 2005, updated here on November 16, 2005.
These are just a few recent highlights from HearingMojo.com. You’ll want to become a regular visitor. The life you improve may be your own.
A reader asks:
I know a patient whose large intestine has been removed and who has developed Meniere’s Disease. Is there any connection between Meniere’s Disease and intestinal function? I also wonder whether there is any connection between Meniere’s Disease and potassium absorption.
We haven’t seen anything that relates Meniere’s Disease to intestinal function in general, but we haven’t seen everything. A search at PubMed didn’t turn up anything that leads us to see a connection (but click for yourself). We have no idea what role the removal of one’s entire large intestine might play with regard to Meniere’s Disease.
We haven’t seen anything that suggests that Meniere’s Disease is caused by or treated by high or low potassium levels, but we haven’t seen everything. (Note that Meniere’s Disease is “idiopathic” — the cause is unknown.) A search at PubMed didn’t turn up anything that leads us to such a connection (but click for yourself). Diuretics are often prescribed to treat Meniere’s Disease, under the theory that Meniere’s Disease results from excessive endolymphatic fluid in the inner ear, and that by reducing fluids in the body in general, one might also reduce endolymphatic fluid in particular. Diuretics may deplete levels of potassium in the body to dangerously low amounts (affecting heart function), so patients on diuretics are usually tested for potassium levels and are often given a potassium supplement or instructions to eat a banana (a potassium-rich food) a day.
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.
Updated December 1, 2005, here.
A play with a focus on Meniere’s Disease will be performed in New York City in January 2006. “Vestibular,” by playwright Kelly Haydon, will be one of four short plays produced as part of “Neurofest,” a theater festival involving neurological disorders, that will be staged together at Theater 5, 43rd Street at 8th Avenue in Manhattan, and at other locations. (Theater 5 is the home stage of the Mint Theater company.)
“Neurofest” is a collection of plays, both full length and short, about neurological conditions, ranging from aphasia to savantism to autism to Meniere’s Disease to Tourette’s. All show the human mind both hampered and augmented by its neurological state. In “Vestibular,” as vertigo attacks a dancer stricken with Meniere’s Disease, a conversation between him and his nurse evolves into a revelation that challenges dependency as a passive force. “Vestibular” is part of a lengthier ongoing project of stories about music, trauma, and the inner ear.
Details are still being worked out, but at this juncture it looks like there will be a total of nine performances at Theater 5 and at other venues. Performances are about two hours long with an intermission, and have a ticket price of around $20. A highlight will be a seminar after one of the performances (to be announced in advance) at which experts, patients, and others will convene after the performance to discuss the challenges that face “Menierians” (Meniere’s Disease patients).
To be receive ticket information as it becomes available, or to volunteer to attend the after-theater seminar, or for information on how to support the project, contact playwright Kelly Haydon at asm_kelly@yahoo.com.
Source: Kelly Haydon, via email.
Patients frequently ask how to find a doctor to treat Meniere’s Disease. The MDIC (Meniere’s Disease Information Center) has a Doctors Page that is devoted to resources to help you find a doctor. Today, the MDIC slightly reorganized that page. There are sections on:
Closed captioning on television is at once a godsend and a bedevilment. David Copithorne explores the struggle to improve the quality of closed captioning by a January 1, 2006, deadline over at HearingMojo.com.
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:
Do Meniere’s Disease patients qualify for SSA disability?
Meniere’s Disease is specifically recognized by the Social Security Administration in the U.S. as a potentially disabling disorder. That doesn’t mean that one is disabled solely because one has been diagnosed with Meniere’s Disease. Most patients do not become disabled, but some do, through no fault of their own. See the MDIC (Meniere’s Disease Information Center) page on disability. Click here.