Author Topic: Visual disturbance - am I alone here?  (Read 687 times)

bfoley

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Visual disturbance - am I alone here?
« on: June 11, 2019, 08:58:25 am »
So this is a question for all my fellow AN folk.

I do photography as a side hustle.  I have discovered that what is "horizontal" appears to be sloping ever so slightly to the left.  Maybe 1-3 degrees.  My AN is on the right side.  The Physical Therapist thought that it is related to the left side of my brain working super hard to compensate for the right balance nerves not working. (My balance is not good but improving more as I continue to push it).  Not going to stop me but its just odd.

Anyone notice similar issues?

tsaff88

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Re: Visual disturbance - am I alone here?
« Reply #1 on: June 11, 2019, 03:32:47 pm »
That's a very interesting observation.  I've sometimes noticed that physicals objects (buildings, etc.) appear to be off the perpendicular but never gave it much thought and passed it off as more faulty brain feedback, like hearing phantom sounds in my deaf ear.  To quote my ENT, "don't worry about it; it's all in your head anyway."   :)

bfoley

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Re: Visual disturbance - am I alone here?
« Reply #2 on: June 12, 2019, 05:35:26 am »
Yay! At least one other fellow AN member has a similar issue!!  Thanks Tsaff88!

Tsaff88 and anyone else, did it ever get better? Or will I forever be adjusting my photos "in the post".

tsaff88

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Re: Visual disturbance - am I alone here?
« Reply #3 on: June 12, 2019, 06:26:26 am »
For me, better can be defined as a combination of physical improvement and subconsciously adjusting to the new reality.  For example, my balance has improved  but keeping a focal point while walking also contributes to being able to walk an almost-but-not-quite straight line.  Over the years I've grown accustomed to the idea that things will never fully return to the pre-AN condition.

Echo

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Re: Visual disturbance - am I alone here?
« Reply #4 on: July 01, 2019, 07:02:09 pm »
Hi bfoley,

I have the same darn issue!  My Gamma Knife was Sept. 2013 an I still have issues.  It's the shots with horizons that I struggle with and quite frankly get annoyed with.  No trouble at all with closer images.
Having said that - I also have trouble with pictures on the wall in the house.  I have sometimes gone to straighten a picture only to be told it was straight before I moved it.   :: :D  Helps to keep ones sense of humor. 

Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

ewhitese

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Re: Visual disturbance - am I alone here?
« Reply #5 on: July 02, 2019, 03:19:41 am »
While in the beginning months after gamma knife I had boughts of double vision vertically not horizontally. I remember a time I had to pull off the highway because I couldn't tell which image to follow. Closed my eyes and napped for an hour and was able to continue.  Today 5 years post gamma knife I have double vision horizontally for about a minute when I wake in the morning and from a nap. I don't  know if it is age related or AN related.

lryan42

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Re: Visual disturbance - am I alone here?
« Reply #6 on: August 08, 2019, 01:52:38 pm »
Absolutely.  Both vertical and horizontal are wonky for me.

When I had my complete vestibular workup done here in SoCal (prior to the AN diagnosis, back when we were still thinking it was a vestibular neuritis), one of the findings was a pretty significant deviation both vertically and horizontally.  For this test they project a series of straight, tilted lines and ask you to make them straight vertically or horizontally.  I think they repeat this like 20 times in both horizontal and vertical.

My AN is on the left hand side and my subjective vertical was consistently about 8* to the left of vertical (normal is 0-2*, I think).  My horizontal was also tilted significantly though less than vertically.

For me, I was able to restore these to "normal" at least for a time through vestibular rehabilitation.  It's been almost 2 years since my last "subjective line test" and I can't imagine I have been able to maintain that degree of compensation given how the rest of my vestibular function seems to have gotten worse.

Note that my AN is in a very rare location (inside the vestibule, rather than in the IAC or somewhere in the middle of the 8th cranial nerve) and is directly impacting my utricle and saccule.  No idea how that changes things vs the more common AN locations.

Here's a link to some NIH details on the SVV test - though isn't AN specific: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4460102/Â
« Last Edit: August 08, 2019, 01:57:09 pm by lryan42 »
2017 - Mild vestibular symptoms; lots of testing, misdiagnosis, and vestibular rehab
2018 - MRI w/o contrast: 4mm x 3mm x 2mm AN
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN

My AN's location is inside the vestibule (rare) and not treatable w/o definitely going SSD; waiting and watching for now.

Surfer

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Re: Visual disturbance - am I alone here?
« Reply #7 on: August 09, 2019, 10:10:03 am »
I don't have the same symptoms, but for others...    I have double vision when I force my eyes to look out of the corner of my eye on the right side. Some of my activities demand this eye activity.  My vision is normal when I do the same while looking to the left.  The 4.6 cm tumor was removed from the right side 3 years ago. It looks like the condition is not going away.
February 2016- 4.6 cm removed at Sloan Kettering NY by Dr. Gutin and Dr. Selesnick.  Residual left behind to preserve the facial nerve. Two year MRI indicates a shrinking of the residual. Three year MRI indicates no change in size.

Crazycat

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Re: Visual disturbance - am I alone here?
« Reply #8 on: September 29, 2019, 02:30:01 am »
Surfer,

  Same deal here. Left-side A.N. and double vision is worst when looking to the left. I've had double vision for over 14 years now.
I have to look straight ahead and squint the muscles around my eyes to focus.

Also, check to see if your tinnitus increases when you move your eyes left to right—mine roars when I shift my eyes like that. You're right: the condition is not going away.

It's also difficult to read as much or as long as I used to in one sitting.

My balance is also compromised. I compensate for this by keep my legs strong. I've been jogging now for 20 years straight.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Helecho

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Re: Visual disturbance - am I alone here?
« Reply #9 on: September 29, 2019, 08:23:17 pm »
Hi to all,

Vision issues are so frustrating!  I wanted to share some success I have had in recovering from my vision issues in case it could help some of you too.

My case is a bit strange because I had traumatic brain injury 7 years ago.  When I started getting dizziness from the AN, for a year and a half it was attributed to traumatic brain injury symptoms returning until the AN was finally diagnosed.  So, I was already in vestibular rehab for a year before surgery.  My surgery was in February this year, and I was back in vestibular rehab as soon as the neurosurgeons cleared me for it 2 months post-op.  Post-op my balance was very slowly improving but kept plateauing and I'd go through weeks of no improvement at all, then slight improvement, then another plateau.  From my previous vestibular rehab experience I knew things were not going well...  At 5 months post-op, still unable to work because looking at a computer for more than half an hour gave me nausea and headaches, I found out about another kind of neurological rehab at the same outpatient center where I was getting my vestibular rehab that I didn't know existed: vision neurological rehab.  I also had problems with things not appearing to be the correct angle (like the horizon and the tilted buildings comments), couldn't find objects in a cluttered drawer, and reading printed materials wasn't as enjoyable as it was before surgery.  I'm at 7.5 months post-op now, and the vision rehab has helped so much! Angles now appear more like they should, I have less of a delay when searching for objects in a cluttered drawer, enjoy reading printed materials again, I started playing volleyball again, my tolerance for looking at the computer is increasing (currently I can handle 1 hour twice per day without nausea or headaches), and also have started making huge advancements in vestibular rehab.  They told me this is because the micro-movements of my eyes are getting better coordinated between the two eyes, and my therapist is impressed with how fast I am progressing.  Everyone says my vision nerve is fine, and has always been fine, it is the neurological processing of the vision signals that was wonky.  The therapist described it as: all the books are there, they just fell off the shelf, and we are going to put them back.  It seems like the combination of vision and vestibular rehab is working very well. 

For anyone having vision issues or not progressing much in vestibular rehab I highly recommend checking out vision rehab.  I hope others will be able to get those frustrating vision issues resolved too!
1.8cm AN diagnosed 27 Dec 2018, complete removal via translab 11 Feb 2019, previous history of TBI on same side

CHD63

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Re: Visual disturbance - am I alone here?
« Reply #10 on: September 30, 2019, 04:44:12 am »
Hi Helecho .....

Thank you for this post describing your vision issue!  I have always felt like my eyes were not working together for quite some time, but thought it was just a residual side effect from my AN surgeries.  I was in vestibular rehab for months following my first surgery, which helped tremendously with walking and balance.  However, the reading/focusing issues you describe have persisted.  Now I am excited that my upcoming appointment at Johns Hopkins may result in a plan of action!

Thanks again.  ANs, the gift that keeps on giving!   ;D

Clarice
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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