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dizzybraod 10-09-2006 11:09 AM

bilateral vestibulopathy
Has anyone else here had this diagnosis? I had one doc say it would go away in 3-12 months and another say it would never go away. My fear is that this is so bad that the other people out there with this can't go on a computer yet. I've had it for over 17 weeks and I still have oscillopsia and a balance problem, some days better and some days worse but never gone.

comeandrelax 10-09-2006 11:21 AM

Re: bilateral vestibulopathy
i think what the doc meant was the damage will never go away but the brain compensates and you get better. balance isn't only from your ears....its from your skin, ankles, eyes ect..... you can get better

dizzybraod 10-09-2006 11:28 AM

Re: bilateral vestibulopathy
I'm scared. What does this mean for the future? I'm 50 now and can't go back to work. Do we who have this odd thing have something we did in common to make this come on? My family and friends don't even ask me how I am any more. I try hard to do as many things as I can that are normal seeming. Are there things that make this worse? Diet, etc. There is a support where I go for PT exercises but it is mostly seniors not with the same problem.

comeandrelax 10-09-2006 12:06 PM

Re: bilateral vestibulopathy
what doc told you that you would never get better?

dizzybraod 10-09-2006 12:42 PM

Re: bilateral vestibulopathy
I saw an ENT and a neurologist. When I got the diagnosis after the ENG, the neurologist suggested I check out the House Ear Clinic. Renowned I guess. The ENT said I could if I wanted to but.........anyway, I went. I went with high hopes for real solutions. The ENT I saw there was unbelievably discouraging. He said the fact that I was getting better slowly, meant maybe there was some hope of possibly getting some relief. At the time, I couldn't lift my head off of any surface without feeling very nauseated. I could hardly walk and seeing while moving was really tough. I was nauseated all the time even at night when I moved. I came away feeling suicidal. The only good thing that came out of it was he said stop all meds and start PT. The other ENT said that PT was not really shown to work but it certainly couldn't hurt. Actually, best thing about PT is that it has seemed to work and I see someone (now twice a week, at about week 7, 3 times) who listens and encourages. I also have muscle aches in my hips and arms from not moving, they are helping with that too.

comeandrelax 10-09-2006 12:59 PM

Re: bilateral vestibulopathy
yeah ents suck at inner ear stuff. they have no clue. the fact that your neuro guy said you would get better just goes to show who is right and wrong.

billybignose 10-09-2006 01:09 PM

Re: bilateral vestibulopathy
Get awey from the ENTs they are talking garbage and aren't qualified to talk to you about your condition. ENTs only spend a day or so in training looking at the inner ear and never usually bother keeping up with it. You really need to see a neurOTOlogist (not a neurologist), who is a specialist in the inner ear and connections to the brain.

Did they say whats causing "bilateral vestibulopathy", as that's the symptom (or end result) not a disease or process. "Bilateral" meaning both sides, and "vestibulopathy" meaning dysfunction of the balance system (vestibular apparatus), do not confuse it with "complete bilateral vestibular loss" as thats complete loss of function on both sides, and outside the setting of intraveinus ototoxic drugs it is exceedingly rare (incidently that doesn't cause dizziness). However, bilateral vestibulopathy is quite unusual and cannot be detected with an ENG/Caloric machine (because "a response to stimulus" result doesn't mean much, and engs work by comparing one side to the other, so it can't tell you if you are having problems on both sides, it's comparitive), and even on rotation chair testing it's not always too apparent. Did they run a complete battery of tests (including rotation chair?), I wonder if they have looked at one of your symptoms (oscillopsia - bouncing vision) which is more commonly associated with bilateral problems and used that to make the diagnosis, even though it's very very common in unilateral patient as well. What were you results (or what did they say based on the test results)?

What "come and relax" was trying to explain, was that when your vestibular system gets damaged it has little propensity to heal itself, so on a physilogical level that damage is permenant. However, you recover through a process called compensation, this is where the brain learns to adapt and interpret the signals from the vestibular system (and your eyes, and skin) in a different way. This process takes a few months for the majority of people, and once complete it leaves them symptom free. For some it takes longer, and for others it won't happen at all (or only very slowly) without the help of VRT (vestibular rehabilitation therapy), which is a form of PT designed to help speed up the process of helping the brain habituate and adapt. This is a whole specialism in PT, with qualifications, and certifide practicioners (only use a certifide one if you can), who train for years to become experts in this subject. Your ENT couldn't have been listening in class as the Cawthorne Cooksey exercises have be used as VRT since the early 1900s, but in the last 30 years "custom" programs have been shown (in hundreds of published studies) to be more effective. Do a search on the web for "vestibular compensation" and you'll find some better descriptions...

dizzybraod 10-09-2006 04:13 PM

Re: bilateral vestibulopathy
I can't tell you how good it feels to talk to people who understand what this is. Actually, I saw an Ear, Nose and Throat doctor and a neurologist. The neurologist suggested the other ENT from this renowned clinic. It was the first ENT who said it would go away and is very encouraging. It was the renowned ENT who said this is the most difficult thing they treat and it is permanent and maybe there might be some possilbe slight chance I would get better. I am better but I fear living like this. I know there are worse things but this is pretty bad. Can't go to work yet but I would like to.

joy78 10-09-2006 05:33 PM

Re: bilateral vestibulopathy
I'm really sorry you had such bad experiences with ENT's. They don't necessarily know what they are talking about. I thought they did too, but soon came to realize that through my own research and from learning about things from people on this board, that just because they are a doctor doesn't mean they are right. I would stick to what your neurologist said, about you getting better. You said things are slowly getting better, and that is a good sign. Yes, the damage is permanent, BUT your brain learns that it is getting bad signals so it compensates for them, and you will feel better. There absolutely is a light at the end of the tunnel and don't let ENT's who have no idea what they are talking about tell you otherwise. Everyone's road to recovery is different with these things, it depends on the damage done and how fast your brain learns. I think it's important for you to find someone who really knows what they are talking about, an expert in the field. See a neuro-otologist (not neurologist). You need the right information to get you through this, not some stupid ENT who has no idea what they are talking about.

I also want you to know because compensation is your brain learning, there can be setbacks. You can feel better and then feel not so hot, and then feel better again. I'm not saying this to bum you out, I'm telling you this because lots of people see improvements and then feel crappy again for a little while which can cause a state of panic that the symptoms are worse again. I went through it, and lots of people on this board went through it. Your brain is learning and because of that it will slip up, I kind of think of it like when you are learning something new, you can have gains but then mess up until you get more practice at it. Same goes for compensation.

Try to find the support from well qualified doctors, who can give you hope and not tell you that things will not get better so why try. That isn't true and those kinds of doctors **** me off. Sorry for the rambling, but I think you and the rest of us who have to deal with inner ear problems have enough on our plate and don't need unsympathetic doctors making things worse for us.
Good luck and use these boards, they are great support system and have gotten me through the roughest of times with this inner ear stuff.

Take care!

stargrave 10-09-2006 08:40 PM

Re: bilateral vestibulopathy
Agree with most of the people here dizzybraod, you should check for a Neurotologyst in your area, and if possible took all the vestibular tests available to see what is really happening to you.

As Billy said, because or your symptoms, they thought of Bilateral Vestibulopathy right away, thoug is quite less common, and again as Billy said, Unilateral Vestibulppathy could easily produce the same symptoms you refer, at least it happened to me.

In any case, you should stay as active as you can and try to get a VRT(Vestibular Rehabilitation Therapy)program as soon as you can, it will help either way(for a bilateral or unilateral dysfunction), there is alot of info about this on the net, and on the sticky(the first post of the board), but I suggest yu to find out a Neurotologyst first, take the proper tests, and then start a VRT program as given by your doctor, this will help you greatly.

In short this VRT will help you to accelerate your recovery process, wich even if you don't make VRT, it's already working in your brain to compensate your body for any kind of vestibular problem you may have, but as I've said before, try to stay active this helps the brain to speed up your recovery, just don't over do it.

One important thing with this is to be patient, it could take some time to fullly recover and sometimes it's a bumpy road, but you'll make it, and try to stay in a good mood, that helps a lot too.

Find your doc, take your tests, and keep it up, you're not alone on this boat.

dizzybraod 10-10-2006 09:43 AM

Re: bilateral vestibulopathy
I had an ENG, included hearing tests but not a rotating chair. I am suppose to have another ENG at the end of this month. I am doing vestibular PT now by PT's that have their phd in balance rehabilitation. I really like going and I believe it is really helping me. How important is it to try to find and switch to a neuro OTO MD? I only take ALLEVe for the muscle aches I am getting as I have become active again. I also get massages. Are there dietary or medicines to avoid and/or supplement with? I do take a multi-vit and calcium.

billybignose 10-10-2006 10:24 AM

Re: bilateral vestibulopathy
Do you know what the ENG results were? The reason I ask is that ENGs are comparitive (they are in effect comparing one ear to the other - which have a natural variance in them anyway), I would be skeptical of an ENG showing bilateral loss simply because without having one side stronger than the other it's imposssible to display a weakness, as even if you have weak or absent calorics on both sides thats normal in a subset of the population (and it's more to do with the ear not responding to the water/air irrigation than and indication of vestibular function - ie you could just have thick bones!). It sounds like your seeing a balance aware PT which is good - though there is a difference between balance training and vestibular rehabilitation, which is a separate specialism (which you PT may be qualified in - but it's worth double checking as it can make a huge difference, especialling at addressing the visual issues). Has any of your doctors hinted at the cause of the dysfunction (I suspect they will say viral, eg Labyrinthitis, Vestibular neuronitis) - and to some extent it's irelavent as the cause is probably long gone. To be frank if the ENG shows some sort of weakness (bilateral or not), and you have no sponeanous disabling attacks of vertigo (other than caused through movement and visual stimulation), then the problem is likely "stable" (as in, your system is damaged but the causative factor is long gone), in which case seeing a neur-otologist won't be a great help as it sounds like your treatment plan is well underway (ie doing VRT), and as long as you address any other factors interfering with compensation (secondary illess, anxiety, stress, depression can all slow down or stop the compensation process) then I can't see them suggesting anything different. Medication doesn't really do anything other than mask symptoms, but in doing so you are also masking the stimulai your brain is trying to adapt to, so it's best to avoid vestibular suppresant medication (except when needed in the short term) as it can slow down recovery.

But Please check your PT is not just doing balance training with you (as they would with the elderly for example), but is doing proper VRT (specifically including VOR work (vestibulo-occular reflex) and head motion work)...

dizzybraod 10-10-2006 10:54 AM

Re: bilateral vestibulopathy
You are correct in that I was given a diagnosis of viral as a diagnosis of exclusion. My left ear showed no vestibular function and the right showed so minimal it is considered none. That is what the report said. The PT is doing VRT. I really thank you for the encouragement. The one doc who was so discouraging really put me in a depression for a couple of days. I am very fortunate to always be an up person. After the couple of days where I weighed suicide, I decided that I was going to try as hard as I could to try to get better. Haven't been badly depressed since, just down sometimes when I feel I am staying the same or even getting worse. My husband is dying for me to have some wine with him but I am afraid. Other than trying to stay healthy is there anything I should avoid? I am going to PT and trying to walk with friends 3 days a week.

billybignose 10-10-2006 12:33 PM

Re: bilateral vestibulopathy
From personal experience the only thing I avoid rigidly (almost) is alchahol - it won't do you any harm at all but it will make you feel a bit woozy, and may take a day or two to subside (alchahol actually effects the viscosity of the fluid in the chambers of the inner ear (which is why it often goes "straight to your legs") but as your brain is wrestling to understand the signals comming from the inner ear any way then adding to complication doesn't help). I think they key is try and be as active as possible, including walking (even short walks) everyday, mall walking (busy visual/crowded environments are usually hard to cope with because we become over reliant on our vision for balance) is also good, try it early in the morning when it's quite and slowly build up to slightly busier times. Of course it's important not to overdo things (as this can be counter productive) so try and pace yourself and if something causes you symptoms that last for hours after, then it's a good sign you're pushing too hard, which is too much for your brain to learn from. But ultimately everything is good as it all helps the brain learn to adapt to the new signals comming from the vestibular system, and reintegrate them with signals from the eyes and postural sensors. It's worth eating well, and sleeping enough as your brain will learn best when everything is at it's optimum, but there isn't anything specific to help with compensation. A symptom one person suffers may not be an issue for the next and vice versa, so it's very much a "suck it and see" type approach, because your brain actually does a large part of the compensating in first few days, and whats left is the fine tuning (even if it doesn't feel that way), so it all depends how your brain adjusted to various stimulae so far, if somethings really bothersome for you then you will need to build up to it. Some people find busy environments awefull, others can't walk far without extreme vertigo, and so on.

If the problem was caused by a virus it is often termed labyrinthitis (inflammation of the labyrinth) or vestibular neuronitis (inflamation of the vestibular nerve) clinically it's impossible to differentiate where the problem lays (without doing an autopsy!!) so most docs use them interchangably, though some docs suggest that if there is hearing loss then it's labyrinthitis (implying the cochlea is also involved), otherwise it's vestibular neuronitis - though it's all semantics really. At this stage it's irrellavent anyway as the virus will be long gone, and your are now dealling with the damage left in it's wake and the recovery process is the same (it's like with a broken arm - once it's broken the cause is no longer relevant, the recovery process is the same).

It is possible to get bilateral Vestibular neuronitis - though it's not too common, regardless the recovery process is the same. I really wouldn't get too hung up on what the calorics/eng results were, as the test are incredibly inaccurate anyway, and as I mentioned before some people just don't respond well to calorics (ie the water/air isn't enough to stimulate the vestibular system - in case you don't know the test works by the hot/cold water (or air) heating the outer ear on one side, which conducts the heat through to the inner ear and the fluid inside expands/contracts this has the effect of stimulating the vestibular apparatus on one side, and not the other, causing your brain to assume your moving and the VOR moves your eyes in the opposite direction to counter that movement, it's these eye movements which are recorded - as you can see it's hardly rocket science, and there is no way of knowing whether the vestibular system is really stimulated other than the result you get back, and getting a back weak or absent readings (especially on both sides) isn't really indicative of anything). There are quite a few "normal" people who have weak or absent calorics, there are also quite a few with a natural imbalance between the ears (ie one side is stronger than the other, and just like eyes thats not too uncommon) however it has no impact on their balance, so calorics don't show the whole picture. Based on what you've said (and that you are suffering vertigo - bilateral patients often don't) I'd be more inclined to discard some of the ENG results and say it's more likely you have dysfunction on one side - not that it matters as recovery is the same. BTW I've heard of quite a few true bilateral loss patients (caused by intraveinus gentamicin) who have absolutely no response to calorics on either side however they vastly improved with VRT.

dizzybraod 10-10-2006 02:52 PM

Re: bilateral vestibulopathy
I only had vertigo in the very beginning. I started on steroids 5 days in and started feeling better with the steroids. I still had a spin when I turned from right to left at night for a while but that is long gone. Glad to hear what you said about alcohol. It is amazing how much everyone wants to see me drink when I tell them I am afraid to. I am so worried about going backwards.

I have been trying to walk with my friends. I shoot for 3 days a week but reality is 2. Based on what you said, I will shoot for everyday even if it is short and by myself. Grocery shopping bothers me but I force myself to do it. PT just told me he thought I would be almost better by the first of the year. I hope so.

Thank you for your support. I can't tell you how much it means to me..

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