Author Topic: Single Sided Blindness and Balance  (Read 3693 times)

milhaus

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Single Sided Blindness and Balance
« on: April 02, 2014, 03:32:23 pm »
Probably a long shot, but doesn't anyone else out there have any experience with vision problems as well as balance problems? I had retinoblastoma as an infant and lost my left eye to it. Then I was diagnosed with acoustic neuroma at 23 also on the left side. I had my first translab operation last July, so since then I have been half blind, half deaf, as well as lacking one vestibular system.

I know that just having single sided blindness by itself has been shown to have a negative impact on balance, but now I am fighting both issues. I get around OK. I haven't hurt myself yet at least, but trying to drive and walk in crowded places has really become scary and challenging. My dizziness still seems pretty severe even this far after surgery and after VRT.   

I have been talking to other people as they go through this process and recover from their surgeries and it seems they are all getting over their dizziness and balance problems with much less trouble than me. Does anyone else have experience with this? Does anyone else have any vision problems as well who can relate?
3.8 cm left side AN diagnosed June 2013

Drs. Thedinger and Milligan at St. Lukes Neurosurgery (Kansas City)

Translab July 2013
Translab round 2 March 2014

Hokiegal

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Re: Single Sided Blindness and Balance
« Reply #1 on: April 02, 2014, 07:34:01 pm »
Hi! I don't have blindness per se, but I was unable to close my AN-side eye for almost a year after surgery.  So I had to keep the eye heavily lubed during that time, which was pretty much like looking through Vaseline.  And during that time, I was adjusting to the hearing and vestibular loss.  Even now, 2+ years later, that eye does not tear and drain normally, and I often have blurry vision from excess tearing.  I have definitely noticed that my balance is at its worst on the blurry days.

I have found that exercise helps.  My physical therapist started me on core / abdominal strengthening, and after I was discharged from PT, I continued with Pilates, working with a personal trainer.  As the core muscles get stronger, they are better able to help me compensate for the vision and vestibular deficits.  Walking helps, too -- just not on a treadmill, at least not yet!  And my balance has greatly improved from those first days when I was using a walker.  But some days are better than others.  Fatigue is definitely a factor.  Even the weather seems to affect it -- my ENT believes it is related to changes in atmospheric pressure disrupting the inner ear.  I'm like a walking barometer -- I know when a front's approaching Atlanta before the meteorologists do.

It sounds like you've been through a lot.  I do think you will continue to see improvement in your balance.  It just takes time.  I'm past the two year point and still improving, even on blurry- eyed days.  I've even started to jog, sort of :). Ever see the movie, Seabiscuit, about the race horse?  True story.  The scene where his owners first see him run, and ask the trainer, "Is he fast?"  "Yeah, in every direction."  Some days, that pretty much sums it up.  But it's way better than a walker!  Time and exercise -- they are your friends.  I try to make the most of the things I can control -- exercise and getting enough rest.  Can't do much about the weather.

Hope this helps.  Hang in there!  And if you're looking for a good movie, check out Seabiscuit! I will warn you, it's NOT a comedy.  But talk about overcoming adversity?  Wow, just wow.  Not just the horse, either.  You'll see what I mean :)

3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni