ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: CHD63 on June 05, 2009, 03:17:10 pm
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OK, Phyl, I'll bite ......
Just curious ..... is it universal with AN patients that walking/dancing ::) in the dark is much more difficult than in the light?
I have learned to adapt fairly well indoors or in the daylight, but if I walk into a dark room or outside after dark, it is almost as if I have no clue what is up, sideways, or down .....
How about others out there?
Clarice
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Am the same in the dark
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Ditto!I actually tried to find my bed in the bathroom! ;D
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Yup, me too. I love to walk at night in the summer but even though we have street lights it's just not enough. If my husband can go with me and hold my hand or arm I do ok but without him I walk like a drunk too. Just a thought but wouldn't it be funny if we all went walking together at night,lol!!We might make some bucks on funniest home videos. Anyway, it was so interesting to read the article that someone posted the link to and to realize that when it's dark we are missing 2 out of 3 of our balance mechanisms and that is why it just doesn't work for us. Thanks to whoever it was that posted the link. I'm horrible with names. Sorry.
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Clarice, do you have plenty of nightlights in the house? Outside is bad and my surgeon said that if you improve a great deal in the day, you may always have problems in the dark. I am even worse when is on a wet sidewalk or pavement and dark out. Really throws me for a loop. This is a good time of year as hate to go out at night in the winter.
Cheryl R
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I have night lights thru out my house. I didn't see well or feel comfortable before my surgery walking in the dark, now if I go into a room in the dark and there is not a light on, I will for sure bump my toes or the wall will run into me :D
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OK, Phyl, I'll bite ......
I'm so proud of you Clarice! :) See, I knew folks would participate and yes, I'm in on this one as well.
*raises hand in agreement*
Nightlights all over my house... walk the dog at night/in the dark with flashlight. Extreme wonky head in the dark, total disorientation.
Phyl
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Vision is such an important part of our balance now. darkness is a definite factor....driving into an unlit tunnel is a bad thing, I try to always think ahead and put on sunglasses 1st and then remove them just as I go into the tunnel.
I find that a very foggy day on the water can be just as bad as the dark. A quarter mile out on a grey sea with a grey sky and grey fog, without a horizon for reference my head starts going all over the place. The start of last years Cape Cod Bay Challenge was pea soup thick...made it rough going at the start for me.
(http://i197.photobucket.com/albums/aa317/stoneaxe/CCBC/IMG_8620.jpg)
I had problems that day also because I found that the artificial horizon of the brim of a hat can throw my balance off....food for thought.
http://www.kenalu.com/2008/08/15/cape-cod-bay-challenge-we-made-it/ (http://www.kenalu.com/2008/08/15/cape-cod-bay-challenge-we-made-it/)
BTW....I love dancing...in the dark or the light..... ;D
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Cheryl .....
Yup, night lights all over the place! And I forgot to mention also that I am very uneasy on uneven surfaces ...... out in the yard or on gravel surfaces, etc. in light or dark!
Clarice
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Hey Clarice - I'm the same. I'm 12 weeks out from surgery and my balance is almost back to usual except in the dark or when I'm tired. I haven't had anything to drink since my surgery so I'm not sure how being a bit tipsy will affect me. I would imagine my balance will be dodgy. This has probably been covered before but I talked to my physio the other day and she said balance is controlled by the balance nerve, our vision and our muscles. With the nerve gone it's up to the vision and muscles. The vision is the primary controller of the two so in the dark the balance can go haywire. She told me that it's really important for me to remember now and in the future to really keep my legs strong. She said that because the muscles also have a large role in balance (I think one side or the other will automatically compensate if we are unbalanced and take the load) that as I get older, if I don't keep my legs strong, I will have more chance of having falls and breaking something like a hip or whatever, than if I had my balance nerve intact. Does that make sense? I hadn't heard this before but she said to keep in mind now throughout the rest of my life that I will need to keep fit and in particular keep my legs and core strong.
cheers
JB
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I think this is a another case of the more you do it the better it gets. I don't have a problem in the dark per se, only notice my
balance is off when I'm really tired or if I've have had too many lazy days! I do things with my eyes shut as much as I can at home - like showering with my eyes shut (sounds wierd I know but apparently it is a good balance exercise - helps with brain awareness). I must admit though I do 'challenge' my balance as much as I can, I really think it helps if you do things regularly.
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Hey Clarice - I'm the same. I'm 12 weeks out from surgery and my balance is almost back to usual except in the dark or when I'm tired. I haven't had anything to drink since my surgery so I'm not sure how being a bit tipsy will affect me. I would imagine my balance will be dodgy. This has probably been covered before but I talked to my physio the other day and she said balance is controlled by the balance nerve, our vision and our muscles. With the nerve gone it's up to the vision and muscles. The vision is the primary controller of the two so in the dark the balance can go haywire. She told me that it's really important for me to remember now and in the future to really keep my legs strong. She said that because the muscles also have a large role in balance (I think one side or the other will automatically compensate if we are unbalanced and take the load) that as I get older, if I don't keep my legs strong, I will have more chance of having falls and breaking something like a hip or whatever, than if I had my balance nerve intact. Does that make sense? I hadn't heard this before but she said to keep in mind now throughout the rest of my life that I will need to keep fit and in particular keep my legs and core strong.
cheers
JB
Hehe...sounds like an add for standup paddlesurfing JB.... ;D
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Hello Alll. I'm a Newbie. I'm responding to this post because I had my tumor removed in 1983 and have ALWAYS had trouble walking in the dark, and in narrow places like aisles and piers. I have trouble walking down rows and sidewalks. I look like I'm drunk. I'm more comfortable walkng down my hallway in my home when I keep my side pressed to the wall. I was wondering if there's anyone out there with balance or vertigo problems after 20 or more years. Also, do you find your eyelid drooping more as you age? My eyes were even a few years ago. Now, particularly in the morning when I wake up, my eyes are uneven. Very droopy on the weak side.
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nite lites everywhere, however, if there's a storm and the lights go out, i "freeze up" in the dark. i noticed when i wash my face at night and my eyes are closed i start to rock back and forth. vestibular therapy helped, but have to admit, i've slacked w/the exercises. i like the "funniest videos of us all walking" post. good visual.
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FWIW: Although I had a good surgical & radiation outcome with almost no complications to speak of, my balance has never quite returned to where it was before my AN manifested itself. I don't have much trouble navigating in the dark, but I do feel a bit uneasy if there is absolutely no light at all. As long as there is even a tiny bit of light, I'm O.K. I assume this is because I depend on my sight for balance a lot more than I used to. I have no problem rapidly walking up or down a stairway without holding on to the railing, but I do have to look down at the steps most of the time, although not continually. I consider such things small deficits that I've adjusted to and easily learned to live with, as we all do.
Jim
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iI don't know if this is common, but I can't walk steady and look up...like at the sky. I have to stop and look. Day or night.
JudithF
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Ditto!
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Hi;
I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.
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I sleep with a night light. And I also find it hard to walk and look up at the same time. I have to stop or hold on to someone's arm to look up.
Syl
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Judith - I was like that for the first few weeks after surgery - I had to stop to look up as I was walking. Now seems ok. Today I had a breakthrough - I could walk holding a full cup of coffee and look at the cup without getting the wobbles. Since the surgery I couldn't look at the mug while walking - I had to look straight ahead, but now, hey presto! Result, now I'll stop spilling everything!
Stoneaxe - Ha ha.... it does seem like an ad for SUP doesn't it? Here's an ad - I fell off twice today , even did a massive faceplant! Water wasn't too cold though!
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I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.
Oddly, but then we all know that I'm at least a little odd, my balance in the dark and with my eyes closed has improved since surgery!
And if I'm deciphering my operative report, my balance nerve was cut.
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I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.
Oddly, but then we all know that I'm at least a little odd, my balance in the dark and with my eyes closed has improved since surgery!
And if I'm deciphering my operative report, my balance nerve was cut.
I don't think that's all that odd Nancy. I'm hoping for a similar outcome. The way I understand it is that the nerve is functioning like a short circuit with the AN on it. The data being transmitted is bad...your brain doesn't know its bad so it continues to process it.....bad balance. When the nerve gets cut. No more data and the brain has to recalibrate using only the remaining available data which is all good....better balance.
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You're so smart! ;)
This morning I had my first dentist appointment post-op . . . a little challenging with the spittoon, but the decreased sensation of the gum was a bonus when she went in there with the probe!
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Clarice,
I've memorized the layout of my house and furniture placement and have less trouble than I used to, but put me in an unfamilar setting and I'm literally lost in the dark. I was going to meet my daughter at a friend's house two blocks away and it was dark enough that night that I came close to falling more than once and actually did fall in the grass. Thankfully it needed mowing and provided a nice cushion. I learned my lesson though, no more solo walking in the dark.
Wendy
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FWIW: Although I had a good surgical & radiation outcome with almost no complications to speak of, my balance has never quite returned to where it was before my AN manifested itself. I don't have much trouble navigating in the dark, but I do feel a bit uneasy if there is absolutely no light at all. As long as there is even a tiny bit of light, I'm O.K. I assume this is because I depend on my sight for balance a lot more than I used to. I have no problem rapidly walking up or down a stairway without holding on to the railing, but I do have to look down at the steps most of the time, although not continually. I consider such things small deficits that I've adjusted to and easily learned to live with, as we all do.
Jim
Jim,
My current experience is similar yours (only on my very best days though), but I have some remaining wonky headedness while in motion all the time. It feels like waves going through my brain. Somehow though, I seem to be able to fight through it and don't allow it to stop me. I think the key for me has been my willingness to challenge my balance to whatever the limit was at any point during my recovery. For example, when I started tennis, all I did was hit a ball against a wall back to myself. I never moved much out of position except a little step forward, back or to the side. If that wasn't enough to get the ball, I missed. LOL. After awhile, I pushed my self to go after balls that weren't so close. THen I started playng with an opponent. Then I started purposely hitting to places that would force me run or stretch, then run AND stretch etc... I think that depsite the wonkiness, I now have a level of confidence that allows me to cope better with things like the dark, stairs, etc... I think pushing is critical to improvement.
All that said, it's definitely trickier in the dark for me too.