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405614 tn?1329144114

Vestibular therapist was really great;

She easily saw what an ophthalmologist, neuro-ophthalmologist and 3 neurologists missed; nystagmus.  Me.  I've been telling them all that I have problems with my vision, the jittery vision, the blurred vision, the feeling like one eye is drifting out of focus.

Not only that, but it's worse on the side that is most affected by moves that increase my dizziness.

She not only saw it, she was shocked because it was so obvious.  She had me looking fast up and down between her two thumbs held about 8 or 10 inches apart, and she said "did you feel that!?".  I sure did, it felt like my left eye was flapping like one of those old window shades that rolled up too fast and was spinning around.

She said that it was no wonder I have what feels like whirling vision, like in cartoon characters.  I told her that a lot of mornings I wake up and my vision feels all jittery, and she said "I'll bet it does".  

I also had real jerky movement to the left, not as bad to the right.  She wants me to go have a videography test; do you think that's what they call a VNG, or is it a different test?

My balance wasn't bad, except for when I stood on my right leg, the whole thing tremored; it's my stronger leg.  My left leg, with the quad atrophy, was fine.  Very interesting.

The thing that made my dizziness worse was going from lying on my left side to sitting up.

She's eager for me to get the new MRI report to my new oto-neurologist before my appointment, so he'll know what he's working with.  She pulled up the report from my earlier MRI.

She explained that my vision, balance, and a lengthy explanation of proprioception weren't all working together.
I have exercises to do, and I can't believe how exhausting the vestibular testing was.  She explained that with my vision doing the lion's share of the work of keeping me upright, that could be a cause for fatigue in itself.

I hope this works!  Just before I left, I hit a dining room chair with the bony side of my forearm and drew blood, as well as bruising it.  I would really like to stop being Kathy the Klutz!

Kathy


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648910 tn?1290663083
I just recently had the VNG because my ENT saw my nastagmus.  It showed there was no fixed suppression during episodes., meaning according to my ENT, naystagmus that is not central will cease when the eyes are given a fixed point to stare at.  My didn't so he says he believes mine is central.  The caloric test was also performed.  My vertigo is not positional, it too is central.

It so amazes me...everyone believes it is central but the neuro.

The test takes a little while and it is quiet interesting.  No sweat...get it done...it just another piece of the puzzle.

terry
Helpful - 0
405614 tn?1329144114
Nancy, I haven't had a chance to check out the site that Lulu posted yet, but I will.  I ran off to get a copy of my new MRI reports; that will be another thread.

I've never had an ENG/VNG, so I'll make sure I get one; I'm good at advocating for myself.  

Kathy

Helpful - 0
152264 tn?1280354657
Kathy, the site that Lulu posted is GREAT. Dr. Hain is the same type of doctor that you are going to see, namely, an oto-neurologist. His site is full of excellent information on all aspects of dizziness and balance. He is wonderful to share all of that with patients, and he is highly respected in the "dizzy" world.

Yeah, I agree, there's nothing like an objective report... my "plugged" ear was blown off by family doctors for a whole month, but it turned out to be severe sensorineural hearing loss... and my neuro symptoms seemed well on their way to being blown off by the neurologist until the auditory evoked potentials came back so abnormal (though I ended up being "let go" in the end anyway).

Definitely don't count on that doc ordering any particular tests--even if your PT sends a note--although if you haven't yet had an ENG/VNG, I'll be surprised if you don't get one.

Take it easy,
Nancy
Helpful - 0
405614 tn?1329144114
Thanks, y'all!  I hope this helps, as wearing a bubble-wrap suit doesn't appeal to me! :o)

I'm looking forward to seeing the oto-neurologist and seeing what he has to say. My PT will send him a note about what testing she would suggest, so hopefully he will order it right away.  

It would be nice if it was during a time when my nystagmus was present.

It's kind of like when I knew I was having tachycardia, but no doctors did anything about it for years, until I was hooked up to an EKG for an injection under anesthesia and my PSVT kicked in and got recorded.  Nothing like an objective report to make sure people understand what you're talking about!

Kathy
Helpful - 0
198419 tn?1360242356
Hey Kath!

Yay!!!!!!!!!!

Oh yea, visual difficulty and probs can totally whipe you out!

I'm so glad you went - so very glad. But get your feelers out woman - you don't need to be wonking yourself about the head, arms, and legs, etc....ha/ha...that goes for the exercises too....

Onward for you!

shell
Helpful - 0
572651 tn?1530999357
Kathy,
What a good experience for you - hopefully the exercises will be of help to you.  I have continued to do mine in a somewhat limited way - my dizziness is not around these days.  I'm waiting to see if it comes back or if it is truly gone.

Did I send you this website -

http://www.dizziness-and-balance.com

It has great information - the doctor here is at Northwestern University and seems to really want to share everything he knows with his patients.  He even has a humanities page where has has posted poetry and artwork by his patients about vestibular problems.

The padded room idea from Nancy might not be so bad........
L
Helpful - 0
152264 tn?1280354657
Hi Kathy. Sounds like you've got a pro for a vestibular therapist. I hope the exercises help.

I'm not sure, but I think nystagmus can be present at some times but not others. I wonder if it just "came out" the day of your visit to the therapist.

Speaking of doctor's reports, my second-opinion neuro wrote "no nystagmus today," which suggests that one might find nystagmus one day but not on another day. That said, I'm definitely not an expert on nystagmus, so I could be wrong.

Certainly in the case of BPPV, the Dix-Hallpike test may not show any nystagmus on some occasions even if it does on others, so we're told.

Have you ever considered getting rid of the dining room chairs? :) -- putting all your furniture in storage and padding all the doorframes until your balance improves? :)

Nancy
Helpful - 0
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