Balance Issues in low light levels

[ANNSFT]

My wife had gamma knife last December 2007.  Overall, we are both happy with selecting the gamma knife option versus the surgery option.  Other than the hearing loss which she had prior to the GK she has recovered well from the procedure.  The only exception is balance issues in low light.  She cannot walk without looking like a drunken sailor at dusk or nightime.  She has no problems indoors though as long as there is plenty of light.  We mentioned this to the Dr. on our 6 month follow up and he merely discounted it saying that it would get better.  Does anyone else have this same issue?  If yes, what if anything did you do to try to correct?  Advise

[sgerrard]

I hope one of the people with specific experience with this balance issue come along and fill you in. But I think the main idea is that your wife is using eyesight as a main form of balance (it is one of three, the others being the balance organ and your feet). So low light means poor vision and more balance problems. I know that some report that practicing regularly will improve it, so they go out for walks at night, staying on reasonably smooth sidewalks, and getting more accustomed to walking in the dark.

I hope someone has a more complete answer for you, and that your wife finds something that helps.

Welcome to forum, by the way. 

Steve

[Cheryl R]

Surgical patients have this problem and I have even been told that it may not completely improve even when the day time one does.              One needs to use night lights and what ever kind of extra light when under those conditions.
Her problem is probably from some swelling and should improve over time.        I am only surgical so hopefully someone has an answer also.
                                                           Cheryl R

[Sue]

Hi,

If you will look on this Balance Issues page and see the post regarding How The Balance System Works, you will find a link to a very interesting article on how this all works.  This is something you and your wife should probably read, because it has a lot of information and explains a lot of what is going on with us and why this is.  I found it quite illuminating, myself.  She will probably read about symptoms that she didn't even realize she had, or had and didn't attribute it to having an AN.  It's a complicated and unique system that keeps us upright! 

Sue in Vancouver, USA

[Omaschwannoma]

The more you challenge your balance system the better it gets.  I do go outside in the dark to walk my dog or just to get out, but I bring my cane.  I do not use my cane to start out with, I keep my chin/head in a neutral position looking straight ahead and walk down the street and back.  Usually about 3/4 of the way back I need my cane for support.  Try this with your partner and when they "graduate" they can do this by themselves but with a cane for support.  I am a surgical patient.

I remember all too well walking just weeks out of surgery in the evening with my husband and all was well when I passed under a street light then my "system" went haywire the second I entered the dark.  Was wobbly, falling into him, swaying uncontrollably,there was no terra firma with each step (sort of felt like I was stepping into nothing), until the next street light and "wham" I was upright, walking normal!  It's the weirdest sensation! 

[gordy]

it was explained to me like this from my doctor when i questioned him on my balance being off since i never thought i had balance issues. he said take for example if your drunk. you close your eyes and the room spins. open them and the spinning stops. our eyes compensate for the balance issues. in the dark its harder. i had gamma july of 2007 and the only things i noticed is if the lights are off at home i notice myself bumping the walls here and there. im assumed the eyes cant focus in the dark to offset the balance issues we have. hope some of this makes sense.

[Dantheman]

I went to the Museum of Natural History with my family last fall. Many of the mammal exhibits are in a dark room with the only lighting coming from the exhibit. That was very challenging for me. I find that I can walk OK in such dimly lit areas but I tire ten times faster than spending time in well lit areas.  Then naturally when I tire the balance goes the way of my energy.

Dan

[sher]

Hi there,
I had CK a little over a month ago and my balance is worse at night. I was getting night balance problems befores CK but they are worse now. I am hoping that that will improve to where I was at some point. I definitely need an arm to hold on to or a cane if I am out at night.
hang in....
Sherry

[OTO]

The worst is when I wake up in the middle of the night half asleep...the room is spinning...   I now sleep with a night light, and that helps.     With only one balance nerve, my eyes need to set that focus point to set my balance.   Exercise is also suppose to help your body adjust....  but for me I need to see.    When I'm driving... the worst thing is driving from the bright outdoors into a dark parking gargage....

[Joef]

My wife had gamma knife last December 2007.  Overall, we are both happy with selecting the gamma knife option versus the surgery option.  Other than the hearing loss which she had prior to the GK she has recovered well from the procedure.  The only exception is balance issues in low light.  She cannot walk without looking like a drunken sailor at dusk or nightime.  She has no problems indoors though as long as there is plenty of light.  We mentioned this to the Dr. on our 6 month follow up and he merely discounted it saying that it would get better.  Does anyone else have this same issue?  If yes, what if anything did you do to try to correct?  Advise

yep .. common problem ... best thing is lots of practice... (it wont get better on its own) take walks at night, walk the dog, leave some indoor lights OFF at night  .. etc... I find I still have it .. 3+ years later.. but I also Kayak at night! ... very hard at first... but now its no problem ... I have more of a problem once I land and need to load the kayak back on the car... because I've spend more time kayaking at night on the water than walking !!...

I should add its ok to bring a cane . or a hand to hold  !! you just need to get out and do it !

[Betsy]

Hello,

I've been working on my balance problems for awhile and have seen a lot of improvement, but I still can't function in the dark.

About a month ago the power went out in my neighborhood.  It was late and I was walking through the living room when it happened.  Suddenly my legs stopped moving, and I felt unsteady.  Somehow I ended up on my hands and knees.  I didn't fall exactly, but I felt a lot safer on the floor so that was okay.  But I didn't know what direction was facing, and I was feeling increasingly dizzy and nauseous.  Trying to move made it worse.  I eventually figured it out and got to a flashlight (which I have in each room for that purpose).  Then the power came back on...of course!

First of all, your wife is very lucky that she has you to help her.  Secondly, if your wife is interested, she may want to try a vestibular therapist.  I suspect some doctors underrate the value of physical therapy for balance problems, but there are a lot of success stories on this forum.  In the meantime, night lights are a good idea.  Flashlights too, if your area is prone to power outages like mine is.

I have a cane called a "pathlighter" too.  It's a little awkward, but it lights up the ground ahead of me and there's something about having that extra touch on the ground that makes me feel more secure in the dark.  I haven't quite got the hang of it, but it's definitely an improvement over a flashlight duct-taped to a walking stick.

Write again and let us know how things are going.

Betsy

[Omaschwannoma]

Betsy,

I just wanted to add to your imbalance in the low light situations can be helped by doing some of the vestibular exercises with your partner in the dark.  I remember the first 6 weeks of vestibular rehab my husband and I would practice these after the sun went down and the house became dark.  It only takes 10 minutes or so, but so worth the effort! 

We delibarately keep the lights off in the house in the evenings, except for the porch light, and I will navigate by the light that comes from the fridge door or television.  This has really helped me during those times I need to get up during the night.  I no longer have that feeling you described of wanting to drop to the ground, that's all gone. 

I am now deliberately challenging myself by walking my dog a little later in the evening so I can walk part of the way in low light outside where your balance is really put to the test.  I am doing "okay" with this, I do bring a cane that I carry but will use it if I feel as though I'm going to fall backwards.  This will take time before that feeling goes, practice, practice, practice! 

We will ALWAYS have difficulty in the dark, but most should be able to get by without wanting to "drop to the ground".  Bumping into walls, stumbling, walking with a wide gate while your arms are extended is acceptable!   

[auntsherry]

Hello to All - I finally realized how great this site truly is for those us and am hoping to pick your brains!  So, may I tell you a bit about my surgery (especially POST)!!! 08/07 I had a 4.6cm AN removed on my left side.  For most of my life I suffered with painful earaches. My family doctor sent me to an ENT specialist (at least that's what the plague on his wall said);  had tubes in and tubes out several times!  Did not solve my problem, so I did what too many of us do, ignored it and continued on with life.  After my husband died 3yrs. ago, I decided to have my doctor check my ears again as  I was having dizzy spells and balance problems - said I had a LOT of scar tissue & should see another ENT doc (needless to say, found a new & great one).  Sent me for an MRI right away and THERE IT WAS!! Great neurosurgeons at University Hospital in Cleveland  - followed by TWO MONTHS in a nursing home and then eight months of VESTIBULAR THERAPY in Naples, FL. (my big brother & wife kidnapped me)!
NO ONE TOLD ME ANYTHING ABOUT GOING TO A NH - OR TOOK TIME TO FULLY EXPLAIN POST-OP PROBLEMS!!   
I continue to have balance issues, left eye dry, left side of face getting better(?), headaches still around, control of left arm & leg I hope will continue to improve.  Totally deaf on left side & partial hearing loss on right.
Any how, life could be worse - so I keep telling myself - according to the professionals I have been dealing with the past year+,
the tumor would have continued to grow and you know the end of that.
Thank you for your time & please know I much I enjoy reading each & every post!  Best wishes to all of you.
Sherry
 

[sgerrard]

Hi Sherry,

Welcome to the forum, and thanks for being brave enough to post!

A 4.6 cm AN is a big one, I am glad to hear that you are getting along okay. We have lots of topics on balance, dry eye, headaches, and facial issues, so you should find lots of information, and lots of new friends, here on the forum. Make yourself at home!

Steve

[Soundy]

I have issues outside at night ... we live in the sticks and I don't have an relatively flat surface to practice
on... I do walk outside and stumble around... I carry a flashlight (mini mag) and when needed pop it out ...
I tend to lift my feet high as if stepping over things that aren't there ... my kids find this amusing ... I get tired
quickly trying to maintain and upright position but with practice it is getting better ... I don't walk across
parking lots at night by myself... I do stagger some and worry about bumping a car

In the house I have night lights scattered about so if I have to get up at night I kinda play a game of
connect the light dots and get around OK... the ones we have have a light that is charged and stays on
even if we lose power

But it is key to practice and challenge what balance you have left