Author Topic: pre surgery nystagmus  (Read 5104 times)


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pre surgery nystagmus
« on: February 23, 2015, 08:26:00 am »
Hey love this forum. I have a 2.2 cm an and frequently feel like my eyes move on their own even when closed. I went to an eye doctor and he said I doubt its related to the tumor but I know he is wrong. He did not even look at my eyes for more then 30 seconds. My surgery is in a month but I was hoping something could help until then. Anyone have this pre surgery? Anything help?


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Re: pre surgery nystagmus
« Reply #1 on: February 23, 2015, 10:14:00 am »
Hi madonal1 .....

Nystagmus was one of the very first symptoms I had before my AN was finally diagnosed.  It was present before surgery and for several months following my first AN surgery.  Even now it occasionally returns when I am very tired and/or stressed.

As for anything helping ..... rest, stress reducers, and reducing caffeine intake.

Best wishes that the nystagmus becomes a thing of the past post-op.  Thoughts and prayers.

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011


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Re: pre surgery nystagmus
« Reply #2 on: February 23, 2015, 12:37:20 pm »
I had Nystagmus before my surgery as well, but nothing post-surgery.
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.


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Re: pre surgery nystagmus
« Reply #3 on: February 23, 2015, 08:19:37 pm »
Nystagmus happens because your Vestibular Occular Reflex has been compromised...

During surgery they normally cut the balance nerve which is believed to help with recovery and ongoing balance problems.
Your VOR wont ever be the same, but without the balance nerve on one side you hopefully wont get the mixed messages from a damaged nerve... I suspect nystagmus may improve after surgery, ask your doctor
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!


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Re: pre surgery nystagmus
« Reply #4 on: February 23, 2015, 09:03:28 pm »


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Re: pre surgery nystagmus
« Reply #5 on: February 23, 2015, 09:33:34 pm »
Ask you AN Drs about vestibular suppressants and if they will help.  Benzodiazepines like valium or antihistamines like mecklazine or even Benedryl are vestibular suppressants and likely will get your brain to ignore the bad data from you damaged vestibular nerve.
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.

Martha G

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Re: pre surgery nystagmus
« Reply #6 on: June 11, 2015, 05:35:27 pm »
I have periodic episodes of nystagmus that just started the last couple of months.I am a 57 yr old woman who was diagnosed 5 years ago with an intralabyrinthine schwannoma. I am in excellent health and exercise daily. I have severe tinnitus, somewhat severe vertigo with a few recent incidents of nystagmus and occasionally I have some pain. I have no hearing in my right ear even with the use of an hearing aid
In October 2010 the tumor was 4.6mm in length.  November 2011 it measured 7.6 mm transverse and 1.3 mm anterior-posterior.  The last MRI indicates a measurement of 8.7.
I am seeing Dr. Jennifer Maw in San Jose, CA. Dr.Maw  has in the past suggested a watch and wait plan. Or she said I could have the tumor removed surgically if it is bothering me so much that it is affecting my quality of life. This is bothersome because I understand the recovery period can be quite long.  I am interested in another opinion as well as an opinion regarding CyberKnife surgery as an alternative.Has anyone had this type of tumor?
Martha G


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Re: pre surgery nystagmus
« Reply #7 on: July 20, 2015, 10:16:20 pm »
My AN was only diagnosed because I developed spontaneous and post-head shake nystagmus that beats toward the AN side, which inexplicably suggests that my AN side is functioning more strongly than my normal side-go figure! My neurotologist has no explanation for this because the AN side should theoretically be weaker, but either way it's what made him order the MRI, and I probably wouldn't have found the AN for years had he not ordered it now. Otherwise, my only symptoms are intermittent lightheadedness and rare vertigo with totally normal hearing. I am on watch and wait for now, so I'm not sure how treatment will affect the nystagmus.


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Re: pre surgery nystagmus
« Reply #8 on: August 17, 2015, 11:20:42 am »
I have it on my AN side. The skin directly underneath my right eye will twitch rapidly "left-to-right" uncontrollably.

This only happens when I'm extremely tired, or when I've been staring at the computer screen too long.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan