Anyone skilled at VNG test results? Won't hold you to it...

[Notanotherthing]

Obviously I do not expect anyone to interpret my test I was just curious of something & Love your nonprofessional opinions. Although at this point I find most of you professionals.I have had sway and stumble balance problems since last fall. All doctors insist that my small AN will cause vertigo not balance problems. That's well &  good I listen to what they say  and figure I am just nuts. I have never had vertigo just list like a ship on the ocean and stumble like a drunken sailor.

 Met with a new ENT and he sent me for the VNG testing today mainly because my vestibular therapists  are concerned because they are testing me and seeing an abnormal VOR.

 So on warm water caloric my eyes went towards my affected ear, which I suppose would be expected. But they continued to nystag (or whatever you want to call it,)  toward the affected ear and I had involuntary turning of my head towards the affected ear as well.  Is that normal?  I was able to hold my eyes straight longer on that side than the other side. I am wondering if this even is vestibular nerve issue. I am thinking I'm crazy. I also threw up I was so sick after that warm water on my affected side.  Think it's psychological? Think it's my eyes? Just wondering. I was then told I should be walking with a cane.   I have some other neurological problems and they're always considering other issues. Just wondering what that reaction to warm water may signal.

[jbbrown15]

I had this done recently. Warm water in affected ear - no response. Warm water in normal ear - dizzy and nauseous. Cool water in affected ear - no response. Dr didn't bother doing cool water in good ear, went right to ice water in affected ear. Ice water in affected ear caused little response by eyes (I couldn't feel anything). Dr told me my affected nerve scored a 2, and said that's essentially dead.

Good luck. Whatever you do, don't doubt what you're feeling. Just because one or two or three docs don't know what it is or why it's happening doesn't mean it's not real. I spent a long time trying to ignore problems because I was told they weren't symptoms of AN, only to find that many other doctors disagreed with the opinion and had treatments to help me.

[Notanotherthing]

Thanks Jean. I agree with you that my vestibular on the affected side must be hanging in there so far. And I agree with you that you say potato I say potata & I too feel these doctors can't say how we feel unless they have an AN  with similar symptoms as us.

 I suppose then this is not AN related. Anyone have an idea though of what may cause the eyes to not go back straight or to the opposite side of the warm air and what may cause involuntary head movement to the warm air side?  Once again not holding anyone to their opinion, but sometimes I just like to have an idea. The technician did ask me if I had any changes in my MRI from originals to my last one ( I have white matter lesions), and asked me if my mild cognitive impairment( which I have)  had worsened and I had to say unfortunately yes. And  that speech cognitive therapy had reached out to my neurologist for a differential diagnosis or they're going to have to call dementia Alzheimer's.    I am no spring chicken, but Im young for all this.  I am sure this question is not appropriate for this board and I'm sure glad that it's anonymous, LOL. But if anyone is skilled at the interpretation of this test I'd love to know your thoughts.

[arizonajack]

Obviously I do not expect anyone to interpret my test I was just curious of something & Love your nonprofessional opinions. Although at this point I find most of you professionals.I have had sway and stumble balance problems since last fall. All doctors insist that my small AN will cause vertigo not balance problems. That's well &  good I listen to what they say  and figure I am just nuts. I have never had vertigo just list like a ship on the ocean and stumble like a drunken sailor.

 

No, you're not nuts, your doctors are nuts.

I can tell you from my own experience that your VS is very likely causing your sway and stumble balance problems (what I call the lurches) because that's exactly what my VS did to me. Not being able to walk a straight line and feeling like I was on a boat or subway train. I never had vertigo (dizziness, nausea, room spinning - none of that), just the lurching and my VS was also small (9mm x 4mm x 3mm) when I was diagnosed.

I was already deaf in that ear by the time I was diagnosed but my ENT sent me for a VNG which concluded that my balance issues were consistent with my VS. Duh.

[Notanotherthing]

OMG @arizonajack you just made me laugh out loud!!  I'm sure I will be able to say "duh" too soon.

I just find it hard when people who don't have one tell you how you're supposed to feel. I mean it's the AN or I have a phantom hand  who pushes me trying to knock me down so I hit my head and join the spirit world with them.

[arizonajack]

I have a phantom hand  who pushes me trying to knock me down

I never thought of that.

Guess I have one, too.

Could explain a lot.

 

[ppg01080]

I asked my doctor (second opinion) why I was having all these symptoms if the AN was so small. His response was that my nerves were getting tired. My symptoms are hearing loss, fatigue, balance issues, vertigo, tinnitus and taste issues. After diagnosis everything I was experiencing made sense.
You know how you feel. I hate when doctors say things like an AN wouldn't cause that. My first neurologist told me the AN didn't cause fatigue.

[robertwh2]

I have not had vertigo since I left the hospital, but stumble all over the place. Had the VNG testing and no inner ear problems and then had balance testing which came back telling me that my good side balance nerve was non-responsive. I of course have since had 2 MRIs making sure nothing is growing over there.

I have visited 5 hospitals, 3 specialist, 5 other doctors, 2 rounds of vestibular PT, somewhere in the vicinity of a dozen different medications, full blown migraine diet (over Thanksgiving and Christmas UGH).... the final results are that no one can tell me why I am so tired, no one can tell me why I stumble all the time, no one can tell me why my eyes are tired, they cannot tell me why my 'good' balance nerve is not working, and they can't tell me why my nerves in general are 'hyper' per 2 Neurologist.

For me this all hit 3 years post op. I was riding my bike on gravel roads 20 miles a week and another 50 on the exercise bike. I was active and then it hit. Stumble everywhere, extreme fatigue, etc....

I tell you all of this to point out that the doctors are 'practicing' medicine. They do not have all the answers and when you are dealing with the brain and nerves, they really don't know that much. Most will try their very hard to help, but I have had 3 specialist and 2 other doctors flat out tell me they have no clue what else to try. Latest suggestion is to go to Mayo and let them experiment on me. That was 18 months ago and I have yet to call and don't plan on it.

What you need to do, is find your limits. I know what I can do to minimize the effects. I had to stop working out or trying physical therapy. They took so much out of me that I could do it but would not be able to make it through work or be any good for my wife and kids. Their is no miracle solution for some of us post AN and we need to learn to adapt. I think coming here for input may be one of your best choices. You get recommendations, can read what others have experienced, and try several things.

If you have not tried any meds yet, a simple one is Dramamine. If I remember correctly I was taking about 150% of the OTC dose.

I wish you the best of luck, I spent 18 months trying to find the solutions especially since mine hit 3 years post OP to no avail. I do pray your results are better than mine.

[Blw]

My symptoms came on almost immediately, within days. I walked around like I just got out of a 6 hour happy hour. If I looked up, I almost fell over. Couldn't stand on one foot. They all cleared. The one good thing about those tests is that they are generally quantitative, and that is good data to compare similar studies in the future. I think teh rule of thumb is those nerves are so crowded in there that you can have a whole bunch of symptoms that don't make sense.