Author Topic: Nystagmus  (Read 3429 times)

mandihester

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Nystagmus
« on: September 16, 2016, 12:54:45 pm »
I was reading over my initial testing reports from the ENT and it showed that I have nystagmus when my eyes are closed.  Is this concerning?  When I mentioned it at my neurosurgeon appointment, it was kinda brushed off- "Yeah I saw that on your report." 
I've been trying to research it a little and I'm not finding too much.  I wonder if it could be directly related to the tumor and dizziness or if there is something else going on as well. 
Has anyone else dealt with this issue?
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

ANGuy

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Re: Nystagmus
« Reply #1 on: September 16, 2016, 03:04:06 pm »
I would be surprised if there are any of us that DON'T have nystagmus.  It is pretty much standard equipment when you get an AN.

I never heard of anything about eyes being closed, they tested me for it with my eyes open.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Sheba

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Re: Nystagmus
« Reply #2 on: September 16, 2016, 05:59:02 pm »

ANers get nystagmus due to damage on the vestibular nerve.  The vestibular system and ocular (eye) system have some very tightly coordinated reflexes ("VOR") that get funky as vestibular nerve goes downhill.  This makes our eye movements more "jumpy", where they would otherwise be smooth movements.

I don't think it is that noticeable to the patient;

medical people look for it as an indicator of vestibular system damage.
Maybe eyes closed testiong is so your eyes won't stop on things you see, the movement is based totally just on vestibular inputs.
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

mandihester

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Re: Nystagmus
« Reply #3 on: September 19, 2016, 06:30:57 am »
Thanks for the info.  I'm glad, I guess, to know it's a result of the AN and not something else.  The audiologist found it on my dizzy test which consisted of various tests with eyes open and eyes closed. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues