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Old 06-06-2012, 10:55 PM   #1
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Bilateral Vestibular Weakness - a likely diagnosis

After nearly 4 years of struggling with oscillopsia, tinnitus, balance problems, disorientation and some other things and not knowing what is going on I may be starting to get a clearer diagnosis.

Just this week for the first time since this all started I did some balance tests (VNG). The results say "No significant nystagmus or other abnormalities throughout any of the gaze / saccade / tracking or positional tests. Caloric responses were very weak bilaterally. This was re-tested using ice calorics and showed similar results. Caloric testing revealed a significant bilateral weakness, as the sum of the four caloric responses is 4 degrees. (30 degrees or less is suggestive of a bilateral weakness.)"

I will be seeing the ENT next week to get his word on this but from reading around on the net and in this forum it looks fairly likely to me that this could be the cause of my problems over the last few years. It also sounds like getting back my life is going to still take a while and will be basically up to me to do the hard yards.

I am thankful though for my husband who has been very supportive and my family as well otherwise life would be extremely difficult. In the last few days since I found this board and have been reading what others with this have said, I have been encouraged that though it seems to be a long hard road there is hope of even great improvement. I look forward to the day! Thanks

 
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Old 06-10-2012, 06:02 PM   #2
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Re: Bilateral Vestibular Weakness - a likely diagnosis

If your balance is really bad, be very careful. Do not be afraid to use use a mobility device such Asa cane, walker, wheelchair I needed in certain situations. Falls can do a lot of damage. ------- Good luck, it does get better over time.

Is your oscillopsia constant? Can you still drive?

 
Old 06-10-2012, 06:04 PM   #3
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Re: Bilateral Vestibular Weakness - a likely diagnosis

If your balance is really bad, be very careful. Do not be afraid to use use a mobility device such Asa cane, walker, wheelchair I needed in certain situations. Falls can do a lot of damage. ------- Good luck, it does get better over time.

Is your oscillopsia constant? Can you still drive?

 
Old 06-10-2012, 07:14 PM   #4
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Quote:
Originally Posted by becomming View Post
After nearly 4 years of struggling with oscillopsia, tinnitus, balance problems, disorientation and some other things and not knowing what is going on I may be starting to get a clearer diagnosis.

Just this week for the first time since this all started I did some balance tests (VNG). The results say "No significant nystagmus or other abnormalities throughout any of the gaze / saccade / tracking or positional tests. Caloric responses were very weak bilaterally. This was re-tested using ice calorics and showed similar results. Caloric testing revealed a significant bilateral weakness, as the sum of the four caloric responses is 4 degrees. (30 degrees or less is suggestive of a bilateral weakness.)"

I will be seeing the ENT next week to get his word on this but from reading around on the net and in this forum it looks fairly likely to me that this could be the cause of my problems over the last few years. It also sounds like getting back my life is going to still take a while and will be basically up to me to do the hard yards.

I am thankful though for my husband who has been very supportive and my family as well otherwise life would be extremely difficult. In the last few days since I found this board and have been reading what others with this have said, I have been encouraged that though it seems to be a long hard road there is hope of even great improvement. I look forward to the day! Thanks

 
Old 06-10-2012, 07:23 PM   #5
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Re: Bilateral Vestibular Weakness - a likely diagnosis

becomming- I read your post with great interest. Ive operated for years thinking I had a nystagmus but was recently tested with negative results. I just viewed an online movie of oppilopsia(never had heard of it). The movie looked like the world looks to me when I have to go into crowded situations. Ive recently developed consistant tinnitus after years of intermittant tinnitus. My left ear is constantly blocked...but no inner ear pain. I must hold my nose and blow 1000 times a day.Im in the beginning stages of diagnosis....scheduled for an mri this week. What are the proposed cures for this oppilopsy....bballokie

 
Old 06-10-2012, 10:25 PM   #6
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Re: Bilateral Vestibular Weakness - a likely diagnosis

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Originally Posted by bballokie View Post
becomming- I read your post with great interest. Ive operated for years thinking I had a nystagmus but was recently tested with negative results. I just viewed an online movie of oppilopsia(never had heard of it). The movie looked like the world looks to me when I have to go into crowded situations. Ive recently developed consistant tinnitus after years of intermittant tinnitus. My left ear is constantly blocked...but no inner ear pain. I must hold my nose and blow 1000 times a day.Im in the beginning stages of diagnosis....scheduled for an mri this week. What are the proposed cures for this oppilopsy....bballokie
Hi bballokie.
There are others in here who can probably tell you more than I can since I, too, am only now starting to find out more about this and am waiting to see an ENT to explain the results of my recent balance test. It's beginning to look like there might not be a real "CURE" (at least not medically) for any of this stuff - oscillopsia, imbalance and the rest - but with a lot of hard work doing exercises that help to retrain the brain (preferably through what is called Vestibular Rehabilitation Therapy) as well as pushing oneself to do everyday activities like walking, running and all the things you used to do without thinking about it etc (ad nausium), one can hopefully regain visual stability and balance, at least to a place where one can function reasonably. There are some people in this forum that are very encouraging and to read what they have done and where they are today after years of hard work is great.

I don't recall if many of the ones in here have spoken about tinnitus much but I certainly have had constant tinnitus firstly in my right ear (a high frequency hissing type sound) and then later in my left ear (a 2-tone sound like a buzzing mosquito or a 2-tone siren). This tinnitus could be related to the loss of hearing I have experienced - initially in the higher frequencies in my right ear when this first happened followed by loss of hearing in the high frequencies in my left ear and then this last year also a loss of hearing in the mid-frequencies in my left ear.

I have a feeling that the 2 things - loss of hearing and bilateral vestibular loss might be from the SAME cause, though I will check this with the ENT. I had gotten the idea from both the ENT and the neurologist that the hearing loss was the cause of my balance problems and no one could tell my what had caused the hearing loss in the first place. The ENT just now told me that he felt the cause of the hearing loss was most likely Small Vessel Disease - where the very tiny vessels that branch out at the ends of the veins in the brain did not get enough blood supply to them and caused something like a tiny stroke (a TIA). This would have caused damage to the hearing nerve if it was in that area. The ENT told me that there was signs of this Small Vessels Disease on my MRI although I don't recall anyone saying that to me 3 years ago. The ENT then wondered why I wasn't on low-dose Aspirin to thin the blood a little to hopefully minimize further little strokes in other areas of the brain. He seemed to be implying that I should have known this and therefore why hadn't I been taking the Aspirin because if I had been then I might not have had this last hearing loss. It seems according to them that what's done is done, can't get it back so get used to your new life.

But according to some of the people in here there is hope of regaining some at least of life as it was before and that is very encouraging. I for one am going to stick around here and learn from others and hopefully be an encouragement for others too as we share this uncomfortable and challenging journey. Nice to know we are not alone, nor crazy, and never doomed to be like this forever.

Last edited by becomming; 06-11-2012 at 05:55 AM. Reason: typing error

 
Old 06-11-2012, 09:15 AM   #7
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Quote:
Originally Posted by becomming View Post
Hi bballokie.
There are others in here who can probably tell you more than I can since I, too, am only now starting to find out more about this and am waiting to see an ENT to explain the results of my recent balance test. It's beginning to look like there might not be a real "CURE" (at least not medically) for any of this stuff - oscillopsia, imbalance and the rest - but with a lot of hard work doing exercises that help to retrain the brain (preferably through what is called Vestibular Rehabilitation Therapy) as well as pushing oneself to do everyday activities like walking, running and all the things you used to do without thinking about it etc (ad nausium), one can hopefully regain visual stability and balance, at least to a place where one can function reasonably. There are some people in this forum that are very encouraging and to read what they have done and where they are today after years of hard work is great.

I don't recall if many of the ones in here have spoken about tinnitus much but I certainly have had constant tinnitus firstly in my right ear (a high frequency hissing type sound) and then later in my left ear (a 2-tone sound like a buzzing mosquito or a 2-tone siren). This tinnitus could be related to the loss of hearing I have experienced - initially in the higher frequencies in my right ear when this first happened followed by loss of hearing in the high frequencies in my left ear and then this last year also a loss of hearing in the mid-frequencies in my left ear.

I have a feeling that the 2 things - loss of hearing and bilateral vestibular loss might be from the SAME cause, though I will check this with the ENT. I had gotten the idea from both the ENT and the neurologist that the hearing loss was the cause of my balance problems and no one could tell my what had caused the hearing loss in the first place. The ENT just now told me that he felt the cause of the hearing loss was most likely Small Vessel Disease - where the very tiny vessels that branch out at the ends of the veins in the brain did not get enough blood supply to them and caused something like a tiny stroke (a TIA). This would have caused damage to the hearing nerve if it was in that area. The ENT told me that there was signs of this Small Vessels Disease on my MRI although I don't recall anyone saying that to me 3 years ago. The ENT then wondered why I wasn't on low-dose Aspirin to thin the blood a little to hopefully minimize further little strokes in other areas of the brain. He seemed to be implying that I should have known this and therefore why hadn't I been taking the Aspirin because if I had been then I might not have had this last hearing loss. It seems according to them that what's done is done, can't get it back so get used to your new life.

But according to some of the people in here there is hope of regaining some at least of life as it was before and that is very encouraging. I for one am going to stick around here and learn from others and hopefully be an encouragement for others too as we share this uncomfortable and challenging journey. Nice to know we are not alone, nor crazy, and never doomed to be like this forever.

 
Old 06-11-2012, 09:30 AM   #8
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Re: Bilateral Vestibular Weakness - a likely diagnosis

hi becomming- as I said I am having an mri this week.....I think this test is a formality to eliminate brain tumors, ms and other possibilities as my base "issue". My vestibular disfunction is unilateral(left side) my hearing, vision and all functions on the right are excellent. Oddly, in the rare moments(once every few weeks or so) my left ear will "pop" and stay open my balance and vision are perfect on that side as well. All this screams of ACD, but this "pop" comes from deep in my ear....I can feel the crackle inside my ear before the "pop". These vestibular issues seem very hard for the DRs to diagnose once they eliminate what can be shown my objective testing(balance tests, mri etc). The posts i read here seem consistant with the fact that multiple DRs, treatment plans etc have been the "norm". I suppose those who get a quick, accurate and successful treatment plan never reach the place where they come to online boards looking for help. I give you kudos for continuing the fight...I can imagine the batle you are fighting being effected bi-laterally. I hope by some miracle your ENT can point you in a direction that will enable you to begin the road to getting your life back....or at least something that resembles your life before this disease became part of it. I've 65 and have been a person with ridiculously good health all my life and this is the first time I've ever had to make any concessions regarding my activity. Thanks for getting back to me.....my prayers are with you as you move forward.....bballokie

 
Old 06-11-2012, 03:45 PM   #9
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Thanks for your reply and your prayers. I guess because this vestibular stuff is something difficult to actually deal with because of its position inside our heads that means the doctors find it difficult to give us real clear answers. I guess the tests and scans they can do generally help us to eliminate some of the nasty things like MS and tumors which is good to know. Hopefully your MRI will clear you of those things. Bilateral, unilateral it doesn't really matter because they both have their own challenges and difficulties. Hang in and find out what you can from the doctors and tests but it seems like a lot of the "cure" will be up to us. A positive attitude, the desire to get well and the ability to push and challenge ourselves and not let this thing beat us will hopefully help us in the end. But more than that for me at least is the encouragement I get from family and the knowledge that God is my strength. All the best with your journey and you have my prayers as well. becomming

 
Old 06-12-2012, 06:06 AM   #10
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Re: Bilateral Vestibular Weakness - a likely diagnosis

The more you do and stay active the better it becomes. There is no medical cure but the body and brain are amazing and the uncomfortable will soon become comfortable. Push yourself, just not over the edge and you will know your limits in time.

I have zero function in either ear, I cannot get dizzy anymore, my problem is now balance but it is getting better. Do not measure improvement by weeks but rather months and years. There are people on this board who are now able to ride motorcycles, water ski, and play tennis, it takes time but does get better over many years!

 
Old 07-27-2012, 09:14 PM   #11
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Quote:
Originally Posted by uga View Post
The more you do and stay active the better it becomes. There is no medical cure but the body and brain are amazing and the uncomfortable will soon become comfortable. Push yourself, just not over the edge and you will know your limits in time.

I have zero function in either ear, I cannot get dizzy anymore, my problem is now balance but it is getting better. Do not measure improvement by weeks but rather months and years. There are people on this board who are now able to ride motorcycles, water ski, and play tennis, it takes time but does get better over many years!
I know I'm late in responding to this thread, but the KEY to BVD and getting back to as much of a normal life as possible is to STAY ACTIVE and push yourself as much as you feel you can each and every day. This condition is the biggest hidden disability that can only be understood by those who have this condition. I have had BVD for 6 years, I'm 43 and after 6 years, I look back once in a while and realize I HAVE made great improvements, but I'm still not mountain biking down Vail in the summer...but that's ok.

 
Old 07-28-2012, 01:33 AM   #12
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Thanks for your encouragement gtparky. Life goes on and it is what we make of it that is the important thing. This is limiting but there's still a lot that we can do.
The only suggestion that has been given to me by a top neurologist who specializes in vestibular problems was to "try using pinhole glasses as they have helped some people". Has anyone ever heard of that or tried them? If so did they help? I am currently on my way back to Kazakhstan with my husband for another couple of years looking after a team who do development type work. Living there has its peculiar challenges but hopefully I will be able to continue working at staying as active as I can in the conditions there.

All the best to you with your challenges...and maybe one day you might just get on that bike ...

 
Old 07-28-2012, 01:35 AM   #13
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Re: Bilateral Vestibular Weakness - a likely diagnosis

Thanks for your encouragement gtparky. Life goes on and it is what we make of it that is the important thing. This is limiting but there's still a lot that we can do.
The only suggestion that has been given to me by a top neurologist who specializes in vestibular problems was to "try using pinhole glasses as they have helped some people". Has anyone ever heard of that or tried them? If so did they help? I am currently on my way back to Kazakhstan with my husband for another couple of years looking after a team who do development type work. Living there has its peculiar challenges but hopefully I will be able to continue working at staying as active as I can in the conditions there.

All the best to you with your challenges...and maybe one day you might just get on that bike ...

 
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