Author Topic: Blance, Wonky Head, Peripheral Vision and Glasses  (Read 9078 times)

wcrimi

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Blance, Wonky Head, Peripheral Vision and Glasses
« on: January 07, 2010, 08:48:03 am »
This may seem like a strange subject line, but I believe I have an insight that is worthy of sharing.  

Many of us have experienced balance issues, dizziness, wonky head, waviness in our head etc.. post op  when standing, walking, or running. For some of us, that experience is MUCH worse when we are outside, in the shopping mall or in other active places.  That has been  my experience also. The theory expressed to me was that the greater activity outside and in malls etc... was harder for our brains to process.

First a little background:

At the time of my surgery I wore mild reading glasses.  About 4-5 months ago I thought I noticed that if I kept my reading glasses on while walking around the house the intensity of the balance related issues I was experiencing was diminished. It didn't seem like it was vision related. It felt more like the frames were blocking a small portion of my peripheral vision, helping me focus on what was in front of me, and that was helping my balance.

I needed a new pair of glasses and had some other issues related to surgery I wanted checked out so I went to the eye doctor. He checked me out, gave me a clean bill of health, a stronger pair of reading glasses and a mild lens for distance (bifocals). To my utter amazement, when I wore the glasses OUTSIDE for the first time, all my balance related symptoms were greatly diminished. That remains the case even now.

I have done some experiments with glasses on and glasses off and it seems clear that I am better with my glasses on.  I have also tried to determine whether it is vision or peripheral vision that is the issue by walking around with my hands cupped at the side of my eyes like horse blinkers and I am better that way too. These are hardly scientific studies, but I felt compelled to share them because perhaps I can help someone.  

If you don't wear glasses, try walking around with your hands cupped at the side of your eyes.  If that helps, I would consider sun glasses or some other extremely mild decorative glasses when you go outside.  It may help.  





    


    
 
« Last Edit: January 07, 2010, 09:16:48 am by wcrimi »
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

sgerrard

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #1 on: January 07, 2010, 10:05:13 am »
If you don't wear glasses, try walking around with your hands cupped at the side of your eyes.

Please tell me that someone discovers this helps, but doesn't want to wear glasses, and is walking around the malls in their town with their hands cupped at the sides of their eyes all the time. While wearing an "I have a brain tumor, what's your excuse" tee shirt.  ;D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Cheryl R

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #2 on: January 07, 2010, 10:10:46 am »
My walking is worse with my bifocals and can get by with wearing them only to read.  I wore them on my head when I was working.
I need a coat with the I've had a brain tumor slogan on it so people will know why in a parking lot now this time of year I look worse than an old person with my walking in the slush and snow!           
                                                                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

wcrimi

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #3 on: January 07, 2010, 11:14:43 am »
If you don't wear glasses, try walking around with your hands cupped at the side of your eyes.

Please tell me that someone discovers this helps, but doesn't want to wear glasses, and is walking around the malls in their town with their hands cupped at the sides of their eyes all the time. While wearing an "I have a brain tumor, what's your excuse" tee shirt.  ;D

Steve

 ;D ;D ;D ;D

I actually did walk around both outside and in malls for short periods of time with my hands cupped like that on and off to try to compare the experience and test my idea.  But I never did it for long enough to be put in a straight jacket or be taken to Belmont Park to run with the horses.  ;)

1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #4 on: January 07, 2010, 11:16:52 am »
My walking is worse with my bifocals and can get by with wearing them only to read.  I wore them on my head when I was working.
I need a coat with the I've had a brain tumor slogan on it so people will know why in a parking lot now this time of year I look worse than an old person with my walking in the slush and snow!           
                                                                Cheryl R

Sorry to hear that Cheryl.

I am really hoping that someone else will share my experience because I'd like to help someone. I feel a lot better since I started wearing glasses all the time.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Cheryl R

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #5 on: January 07, 2010, 12:27:25 pm »
It is worth a try for anyone with the walking issues.     I am one of the few with no balance nerve on either side but the glasses bothered me even before that last surgery on the other side.             Outside is my hardest  area  but do it some anyway and a mall when can as do get along in there but have my drunken sailor times.   It all varies from day to day.  I can feel weird though even when looks like I am walking ok.       Other times not as wonky.                 I just know each day I can wonder what is the annoyance of the day.        The off balance day, the runny nose day or having the more difficulty with hearing someone day.   
You adjust.                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Wwoodian

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #6 on: January 07, 2010, 06:59:55 pm »
Yes!~ I agree.  When I went to the grocery store for the first time I was shocked at how much "visual stimulation" there was from about 6 feet off of the ground to the ceiling.  Stuff hanging everywhere.  I'm sure it has always been there, but my brain was having a very tricky time processing it all.  It was horrible, and I was so eager to get back home.  Now I find that my worst times are when I'm exposed to the most severe stimulations--whether visual or noise related.  One of two of the holiday get togethers that involved lots of noise and excitement were pretty overwhelming.  I definitely cup my hands to my eyes without even meaning to, in order to protect my ability to manage.  My son thinks that I need "baseball glasses" --the kind that you flip up the lenses. 

Glad to see I'm not quite alone!
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

Jim Scott

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #7 on: January 08, 2010, 03:21:22 pm »
Wayne ~

I want to thank you for posting your observations about peripheral vision having some effect on balance.  It may not be scientific but if it helps anyone, you've done a service for those who benefit from your experience.   Even if it helps no one, your attempt to share information is appreciated.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wcrimi

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #8 on: January 08, 2010, 04:45:33 pm »
Wayne ~

I want to thank you for posting your observations about peripheral vision having some effect on balance.  It may not be scientific but if it helps anyone, you've done a service for those who benefit from your experience.   Even if it helps no one, your attempt to share information is appreciated.

Jim

You're welcome Jim.

I've been alternately walking around the neighborhood, house, and mall with and without glasses and with my eyes cupped and without them cupped (at least when no one is looking  ;D) for several months now. I wouldn't have mentioned this observation unless I was fairly certain that there's something about peripheral vision and MY BALANCE (and waviness in MY head) that is related. If I'm the only one like this, at least I tried.  But I have a hunch there are others. If all it takes is some decorative sun glasses to help a few people feel a little better when they go for a walk on a beautiful day, I would be thrilled for them.




1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

cin605

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #9 on: January 08, 2010, 05:44:39 pm »
I will try this out......i am getting better at the grocery store...but the mall is another storey...or any store w/ loud music really throws me.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

michelle d.

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #10 on: January 08, 2010, 06:46:42 pm »
I love "Wonky Head"....that describes how I feel!  The first time I watched tv after surgery, I was overwhelmed and couldn't keep up with it!  The visual stimulation was too much and I'm still finding that's true....you all talk about stores (especially malls) and restaurants that have so much going on and it's still a lot for me to take in, I sort of zone out and I guess wonky head describes it!  :D  I was a "fluffy" before surgery anyway but now it's even more so...oh well, this is how it is. Went today for MRI follow up and the doctor told me he'd see me next year!!  Yeah!  ~michelle d.~
Acoustic Neuroma on right side--removed Nov. 13th, 2009 @ Strong Hospital, Rochester, NY....Translab.   50 years old

wcrimi

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #11 on: January 10, 2010, 07:49:18 pm »
Michele,

It gets better. I promise you.  ;)
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Wwoodian

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #12 on: January 11, 2010, 04:39:02 pm »
I will try this out......i am getting better at the grocery store...but the mall is another storey...or any store w/ loud music really throws me.
Yikes!  Your surgery was a year and a half ago and it is still bothersome?
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

wcrimi

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #13 on: January 11, 2010, 07:46:49 pm »
I will try this out......i am getting better at the grocery store...but the mall is another storey...or any store w/ loud music really throws me.
Yikes!  Your surgery was a year and a half ago and it is still bothersome?

I noticed that you have double vision. I don't think that's a particularly common symptom, but I had that also. During the first week it was very troublesome. Then it changed to only being a problem when I was lying down. Then it changed to only being a problem when I was really tired. Then it went away. I would say the whole process took a 3-4 months. I was told right from the start that it would go away. They were right, but it took a little longer than the estimate.  I'd be curious to know how yours is doing.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Wwoodian

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Re: Blance, Wonky Head, Peripheral Vision and Glasses
« Reply #14 on: January 12, 2010, 11:01:21 am »
My field of double vision hasn't changed at all since my surgery.  It is basically when I look down or to the right.  My stabilization and "jumpy" vision seems to be improving a small bit.  Riding in a car, going for a walk etc. is extremely uncomfortable--very nauseating.  I've been starting to walk more though because I read on here that walking will help it to improve.  I am very thankful for my great outcomes--I don't want to seem like a complainer.  The vision problem is very impactful though.  I can't drive--reading is very tiring (I can only do it with one eye).  I'm definitely "wonky" headed and have very bad short term memory problems.  I will do something and minutes later don't remember doing it.  I guess that all I can do is wait.  I'm thankful for this forum because that is where I'm getting all of my information.  I have heard from other long term "double vision" people--but they seem to be very few.  It sounds like their double vision improved between four months and nine months.  I'm glad to hear that yours got better on the shorter side!  I guess I just have to be more patient--it is hard!
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!