Author Topic: Falling! Is it really necessary?  (Read 14165 times)

MDemisay

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Falling! Is it really necessary?
« on: August 22, 2012, 02:28:30 pm »
To my AN friends,

I fell a couple of nights ago at 2:00 in the morning. I get up in the middle of the night to go to the bathroom and upon returning as I'm rounding the corner of my bed I fell.....The only thing a bit bruised is my ego as I fell on my softest part my tush! I already use a night light but whenever I wake up I have promised myself and my wife to turn on the light.

She was startled and couldn't go back to sleep for an hour! I was wondering do any of you have similar issues with disorientation at night?

The answer to the above question is no.

With proper lighting comes increased awareness of one's surroundings.

Mike
« Last Edit: August 23, 2012, 02:53:14 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

james e

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Re: Falling! Is it really necessary?
« Reply #1 on: August 22, 2012, 03:17:00 pm »
I am wonky 24/7, 29 months post-op. It never stops. I keep flash lights all over the house. If I cannot see light, I get totally lost in space. It is funny that I am okay on my boat. I am scared to death to dive into  the water because I am afraid I will get lost underwater. It is a  terrible feeling.  I have a hall way that leads to my garage, and if I do not turn on the light at night, it is pretty frightening to walk down that hall. It is actually my benchmark about how I measure my wonkyness. I fell down last week cutting the grass...turned my head fast and lost my balance. Not complaining. This is just part of my life, and I accept it.

James

KBL

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Re: Falling! Is it really necessary?
« Reply #2 on: August 22, 2012, 05:19:00 pm »
If we go someplace at night, I have to hang onto whoever I am with while walking to and from the car. 
I always bump into things when I go to the bathroom at night, ever though we have night lights.  My legs always seem to be bruised.
Darkness seems to have a lot of challenges.  I am also wonky during the day.  Sigh. :-\
Karen
5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm

Ned

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Re: Falling! Is it really necessary?
« Reply #3 on: August 23, 2012, 07:56:49 am »
Nine years post FSR and balance and falling are the norm.  Darkness is very dangerous, I, too have to hold on to someone when walking at night.  Driving to my office, 15 minutes away, and when I arrive must lay down for awhile before starting my day.  I guess I am going to have to stop attending church worship services, went last Sunday and had to keep staring at the floor or the dizziness overwhelmed me, just left half way through the service.  I never know when the dizziness will appear, can go a few days and then bam here comes my little buddy.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

It is what it is

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Re: Falling! Is it really necessary?
« Reply #4 on: August 23, 2012, 08:17:40 am »
I was hoping these symptoms would get better with time but obviously this doesn't always happen.  I'm sorry to hear that balance continues to be a problem for all of you, especially at night. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDemisay

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Re: Falling! Is it really necessary?
« Reply #5 on: August 23, 2012, 09:50:26 am »
Karen,

As a fellow AN traveler I can appreciate your sympathy! But we can help ourselves here!   ;D ;D ;D

Where low light situations occur, the answer that we all are seeking is that we have to constantly be aware of our lighting levels to help ourselves from falling off balance. It forces us to walk more slowly.Where there is darkness, specifically sudden darkness, there always has to be a fully charged flashlight close at hand or other source of light.

Apart from having bruised shins and egos,we must not let this become a handicap, if at all possible..... Our balance systems have been compromised ---fine, but there is something that we can do about it. ADAPT!

I don't want to hold myself out as an example here but it is something that I have been doing for a long time (since I was 17) I have learned that instead of feeling sorry for myself (as a victim of multiple strokes at ages 10, 13, and 17) I feel proud of myself for having adapted so well. Having an additional handicap, as an AN is, is certainly challenging, but not insurmountable.

Sometimes you have to pick yourself up analyze the situation or the reason you fell (low light)and adapt (get a flashlight or put on a lamp) or else you will fall again.


Certainly, there are others here with other handicaps than an AN.

In all cases, we mustn't be lulled into feeling sorry for ourselves, we MUST adapt.

I will reiterate my statement, it helps us to illuminate dark places, for the eyes are much more than merely "windows on the soul" they are our brains feelers or mapping devices they are constantly working (except when we are sleeping). Our bodies have learned to adapt, our eyes have replaced our disconnected vestibular nerve in functionality. That is why we seem "lost" in darkness.

My AN friends, I am 55 now, I intend to live a great deal longer, I won't let my lack of balance at night slow me down, not when I am getting up from bed, I will merely turn on one more light! I remain determined throughout this!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

It is what it is

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Re: Falling! Is it really necessary?
« Reply #6 on: August 23, 2012, 10:00:57 am »
I respect what you are saying Mike.  The empathy I was offering was as a fellow ANer dealing with balance issues and sharing compassion for our individual paths as we learn how to cope and adapt to what is.  You are a great role  model in offering your story as to how you have learned to cope.  Thanks. :)

Karen 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDemisay

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Re: Falling! Is it really necessary?
« Reply #7 on: August 23, 2012, 10:44:53 am »
Karen,

Perhaps you just uncovered a cognitive deficit of mine. I took you literally! I apologize! I read sympathy for empathy.

I certainly didn't mean to come down on you! I'm just trying to encourage everyone to adapt. AN's are one of life's speedbumps,  there are many others!
We all must slow down when we go over them.

By the way, I'm honored that you hold me in such esteem, I just am a humble man trying to make his own way in life.

I truly feel fortunate that now, through this medium, that we all can share our stories and hopefully inspire each other to action!

Thank you for being empathetic!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

It is what it is

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Re: Falling! Is it really necessary?
« Reply #8 on: August 23, 2012, 11:19:34 am »
Thank you Mike.  Have a delicious day.  :)
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

stoneaxe

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Re: Falling! Is it really necessary?
« Reply #9 on: August 28, 2012, 10:51:04 am »
I woke up in the middle of the night once and when i went to get up just kept going and smashed my forehead against the closet door...luckily I hit the hardest part of my anatomy... ;D. I did think about rigging a motion sensor light to automatically come on when i swung my legs out of bed but instead just made sure I took it slowly and if feeling dizzy turned on a light.
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

MDemisay

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Re: Falling! Is it really necessary?
« Reply #10 on: September 06, 2012, 01:31:49 pm »
An hilarious thing just happened to me!

In talking to a person seriously,  I leaned a little too far on a couch while sitting on the arm...... I fell over heels over head on to the couch and laughed and laughed.....a bit embarrassing to say the least (mostly for me) but it got us to laugh at ourselves.....a d*** Van Dyke prat fall! Priceless!

Just wanted to share that! and make you laugh!


Mike

If you take everything seriously, there is definitely something wrong! ;D ;D ;D


1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

arizonajack

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Re: Falling! Is it really necessary?
« Reply #11 on: September 07, 2012, 07:57:54 pm »
Buy night lights and plug them in at various locations in your house.

Mine's about half way down my hallway. Doesn't disturb my sleep but there's just enough light so I can see where I'm going when I get up in the middle of the night.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Kathleen_Mc

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Re: Falling! Is it really necessary?
« Reply #12 on: September 08, 2012, 04:22:29 am »
I'm sure I had worse balance in the dark when this first happened to me however I do not find this the case anylonger, I work 99% at night making rounds of the unit with low lighting and a flashlight......maybe it gets better with time/practice?
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Brewers7

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Re: Falling! Is it really necessary?
« Reply #13 on: September 08, 2012, 07:25:52 am »
In March I climbed the Acropolis in Greece on a windy day.  A struggle, but I made it without incident.  In May I fell at 3:30 a.m. in my living room after going for an ice cream sandwich.   ;D
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Jim Scott

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Re: Falling! Is it really necessary?
« Reply #14 on: September 08, 2012, 12:20:36 pm »
In March I climbed the Acropolis in Greece on a windy day.  A struggle, but I made it without incident.  In May I fell at 3:30 a.m. in my living room after going for an ice cream sandwich.   ;D

Susan ~

That is either the definition of 'irony' or an ominous message about eating ice cream in the wee hours of the morning.   ;)

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.