Author Topic: Dancing in the Dark??  (Read 9783 times)

CHD63

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Dancing in the Dark??
« on: June 05, 2009, 03:17:10 pm »
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
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

jazzfunkanne

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Re: Dancing in the Dark??
« Reply #1 on: June 05, 2009, 03:31:53 pm »
Am the same in the dark
over 4.5cm AN removed dec 06

cin605

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Re: Dancing in the Dark??
« Reply #2 on: June 05, 2009, 04:45:19 pm »
Ditto!I actually tried to find my bed in the bathroom! ;D
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

epodjn

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Re: Dancing in the Dark??
« Reply #3 on: June 05, 2009, 04:53:51 pm »
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.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Cheryl R

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Re: Dancing in the Dark??
« Reply #4 on: June 05, 2009, 07:17:32 pm »
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
                               
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

TP

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Re: Dancing in the Dark??
« Reply #5 on: June 05, 2009, 07:35:16 pm »
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
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

ppearl214

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Re: Dancing in the Dark??
« Reply #6 on: June 05, 2009, 07:48:28 pm »
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
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

stoneaxe

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Re: Dancing in the Dark??
« Reply #7 on: June 05, 2009, 08:01:42 pm »
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.


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/

BTW....I love dancing...in the dark or the light..... ;D
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

CHD63

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Re: Dancing in the Dark??
« Reply #8 on: June 05, 2009, 09:35:18 pm »
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
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

joebloggs

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Re: Dancing in the Dark??
« Reply #9 on: June 06, 2009, 02:14:39 am »
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
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

Esperanza

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Re: Dancing in the Dark??
« Reply #10 on: June 06, 2009, 06:04:57 am »
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.
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

stoneaxe

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Re: Dancing in the Dark??
« Reply #11 on: June 06, 2009, 09:57:46 am »
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
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

JudithF

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Re: Dancing in the Dark??
« Reply #12 on: June 06, 2009, 11:32:54 am »
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.
Suboccipital. Bone removed and never replaced. 1983, 2 cms, totally deaf on right, balance nerves removed, had to learn to walk again, balance problems persisit, nauseous daily, 62 yrs.

marguerite

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Re: Dancing in the Dark??
« Reply #13 on: June 06, 2009, 12:59:04 pm »
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.

Jim Scott

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Re: Dancing in the Dark??
« Reply #14 on: June 06, 2009, 01:41:54 pm »
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
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.