I know this may be a stupid question but here it goes anyway.
First, do most people here know which ear is causing the problem? Mine clearly is the right ear. I know for sure. It’s got slight fullness and I sway to the right and is sensitive to sound. When I look to the right, it takes a little longer to focus. In case you’re wondering, yes I got a MAV diagnose. But I’m sure my balance issues are coming from the right inner ear alone. So I was wondering if I could just have the vestibular nerve cut? I know I’d be worse for a little while until the left inner ear took full control… But, would doctors even consider it, since it’s done mainly for Menieres patients? Or, do you think that would be a very bad idea? It sounds good on paper and it sounds like it would actually work even for certain MAV patients.
Has anyone here ever considered this or had this surgery done?
I’ve wondered the same thing, since I’ve got a problem ear too (my left). But the thing is, if it doesn’t work, then you’ve permanently given up half of your vestibular function with no positive gain from it. Would you want to be the guinea pig for such a procedure? I don’t think I would.
there’s gotta be someone out there that has been misdiagnosed with menieres’s that actually has MAV and has had it done. Don’t you think?
Greg
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The question I would ask is, is it possible that I have central vertigo masquerading as peripheral vertigo, or central vertigo in addition to peripheral? Unless I was 100% sure the answer was no, I wouldn’t chance it.
Migraine can damage the peripheral vestibular system, so sure, cut the nerve and your brain no longer gets the mixed up signals. But if the brain’s information processing centres are affected, or get affected later by the same disease process… then what?
Meniere’s is (supposedly) 100% a peripheral disease process. I even wonder about that, since there is so much overlap between MM and MAV that it seems likely that in some cases that are clinically indistinguishable from MM, the root cause is migraine. But if the root cause were known to be peripheral and I were disabled by vertigo, then I’d jump on the operating table. If I wasn’t sure as to the cause or localisation of the disease, I would be much more hesitant.
I’m curious now. I’ve never had any ear problems. All my hearing tests have been clean. Yet I have so many MAV symptoms and have been dx with MAV.
Are you thinking or were you told that your ear issues are causing the Migraine? Isn’t it the other way around, something wrong with the blood vessels and ion channels in our head are causing many different symptoms, one of which is your ear problems? Even if you had surgery on your ear the original problem hasn’t been addressed.
there’s gotta be someone out there that has been misdiagnosed with menieres’s that actually has MAV and has had it done. Don’t you think?
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There most certainly are people in this boat. And even more who just have MAV but have been told and think they have MM. These sorts of stories are what prompted me to write the MAV survival guide – so that people would not make the mistake of having an operation that would forever change their balance hardware when all along the long-term condition was much more likely a central migraine issue.
Your question is an interesting one but I wouldn’t go there because while migraine may be causing your particular ear problems that you can really detect, it may also be screwing up central processing in the brain. Even if you did cut the nerve, it would not guarantee that such a migraine brain would stop creating the illusion of imbalance and derealisation etc. Still, there might be the odd case for which an operation like that would work but what a risk. The person would have to compensate for the loss and we all know that a migraine brain just can’t get it’s act together until the central issues are quieted down with lifestyle mods and meds.
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The question I would ask is, is it possible that I have central vertigo masquerading as peripheral vertigo, or central vertigo in addition to peripheral? Unless I was 100% sure the answer was no, I wouldn’t chance it.
… there’s gotta be someone out there that has been misdiagnosed with menieres’s that actually has MAV and has had it done. Don’t you think?..
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I spent a lot of time on a meniere’s forum before I received an MAV diagnoses. I’ve seen several people get the surgery done, and things got worse for them. They usually went into the surgery with a Meniere’s diagnoses, and a couple years later got an MAV diagnoses. It was stories like theirs that convinced me to get a second opinion when my doctor started talking surgery.
I had that question because I know my inner ear actually works fine, as I’ve never had spinning vertigo and the tests I’ve taken for the inner ear all come clean. But it’s the swaying to the right and dysequilibruim and the sensitivity I have around and near my right inner ear that I notice is the culprit. When I tap on my head behind the right inner ear, I notice bobbling vision if that makes sense. When I tap behind the left inner ear, all is normal and fine.
That leads me to believe that somehow, the inner ear nerve is causing this and nothing else. I think (although I don’t know for sure) that the blood circulation is actually just fine and probably the same on both inner ears. If it weren’t, I’d of had some nausea and spinning vertigo at one point or another right???
So cutting the nerve seemed to be maybe a cure in my case anyway. But to chance that I don’t think is worth it as I agree with all of you.
There’s gotta be a way to chill that nerve out somehow and make it calm down a bit.
We all pay very close attention to our own symptoms and I have learned enough to know the difference between a nerve issue, blood circulation issue and other issues to have a good reason to believe that my problem may be stemming from the balance nerve alone.
There’s gotta be a way to chill that nerve out somehow and make it calm down a bit.
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Unless you have something against chronic use of vestibular suppressants, that might be the way to go then. Many people are helped to live a normal life with benzos.
Greg–I have to agree with others that this would be a big risk and you might end up with worse trouble. I am a newbie here (though not new to dizziness; have been reading other forums a long time) and I do not think any doctor would even do that surgery on you unless there were very strong evidence (other than your subjective symptoms) that you have peripheral damage and which ear it is. Also, you don’t want to have the surgery (I’ve heard) unless you basically have no life.
It is not just an inner-ear surgery. They have to drill through your skull and I think have a neurosurgeon present besides a neurotologist. It is a big deal and a big risk.
I am not 100 percent sure about all this, but these are my recollections. If you are suspected of having central problems and they cannot verify which ear is the problem (if only one is), I don’t think they’d do the surgery anyway.
Maybe I should go on benzo’s for a little while and see what happens? But do you think that after stopping the benzo’s my problems would still be there?
Maybe I should go on benzo’s for a little while and see what happens? But do you think that after stopping the benzo’s my problems would still be there?
Greg
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Benzos are usually used “as needed”. Some people (me for one) use them as little as possible, close to not at all because they ruin my focus. But some people need them to get through the day. Yes, they only control symptoms and not the underlying problem. The best solution is to identify triggers and eliminate them if you can, or take something that actually nips the migraine CSD in the bud. Benzos don’t do that, all they do is to deaden the brain’s response to the vestibular stimulus. Sort of a less permanent interruption of the vestibular nerve pathway than cutting the nerve.
I’ve been trying to manage this Vestibular Migraine condition for nearly 19 years and the symptoms use to be much worse. I tried anti-depressants over the years and other types of prescription druges but none of them worked. The only med that has worked for me is Xanex. I never became addicted…i’ve used it cause it helped me to keep working and go to a movie or other outgoing stuff and be with friends. With out this med i could not even step out the front door. I believe this med helps to suppress the inner-ear nerve so that the Motion is less and my head feels less tense and irritable. I use to be on a higher dose in the 1990’s but currently i only take about 1/2 tab per day (0.25mg)…which is the lowest dose you can purchase. Trying to reduce this medication was not easy…i’m not going to lie to you. But it can be done. If a person finds a medication that helps with your quality of life then to me this is all that matters. I never thought of myself as an addict…i just took this med to have a normal of life as possible.