Author Topic: A tiny grumble  (Read 13231 times)

arizonajack

  • Hero Member
  • *****
  • Posts: 1140
  • Arizona - It's a Dry Heat
Re: A tiny grumble
« Reply #15 on: June 08, 2012, 09:11:42 am »
I'm recently diagnosed and on watch and wait.

I'm having the same balance issues that you are all describing.

I'll be sitting for a VNG next Tuesday.

http://www.stopdizziness.com/services_vng.asp

Not sure it will tell me anything I don't already know. Anybody else have one?

I found a set of exercises online.

http://www.nyogmd.com/wp-content/uploads/VestibularExercise.pdf

Anybody have any success with stuff like that?
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

  • Hero Member
  • *****
  • Posts: 782
Re: A tiny grumble
« Reply #16 on: August 07, 2012, 09:50:38 pm »
Over 20 years later and I still am dizzy everyday and walk like a drunk on a "good" day, on a "bad day" I have even been so bad I actually fell off my kitchen chair (from sitting on it)! Just go with the flow! and too bad if people think you're drunk!  ::)
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)

LizAN

  • Sr. Member
  • ****
  • Posts: 354
Re: A tiny grumble
« Reply #17 on: August 09, 2012, 04:38:43 pm »

I found a set of exercises online.

http://www.nyogmd.com/wp-content/uploads/VestibularExercise.pdf

Anybody have any success with stuff like that?

Those exercises are similar to the ones House Clinic gave me.  I'm still working on them.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: A tiny grumble
« Reply #18 on: August 10, 2012, 12:56:15 pm »
Thank you LizAN!

I hope everything is working well for you. I will try these.


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!

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: A tiny grumble
« Reply #19 on: August 15, 2012, 09:02:42 am »
Quick up date since I've not been on this forum in a long time.

I've been working with a personal trainer who has each session given me balance exercises along with my weight training exercises and they seem to be helping.  I still have dizziness / balance issues but I do think the balance issues have improved since I've been working with Colleen.

I still walk like a drunk sometimes but at least I haven't fallen over.  Still bang into the door jams at home if I'm not paying attention but that's all a part of life now.

Stay positive!
 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: A tiny grumble
« Reply #20 on: August 15, 2012, 10:37:17 am »
Karen,

for the record I bang into door jambs as well and I stub my toes as well. I applaud your efforts with a therapist specifically trained in balance, good job!

 I walk with a cane, but who's complaining polite people open doors for me! I used to mind but , now it's kind of nice! I always am thankful. We have to be, after all when I was younger I used to always open doors for gentlemen and ladies, I still do! I am also thankful for those moments when I can catch up with you.

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!

arizonajack

  • Hero Member
  • *****
  • Posts: 1140
  • Arizona - It's a Dry Heat
Re: A tiny grumble
« Reply #21 on: August 17, 2012, 12:14:44 pm »
I recently came across the term "vestibular rehabilitation therapy."

There are numerous resources.

Start here:

https://www.duckduckgo.com/?q=vestibular+rehab&t=i
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

PhilippinaJane

  • Newbie
  • *
  • Posts: 2
Re: A tiny grumble
« Reply #22 on: September 05, 2012, 01:52:03 pm »
Even after my GK the balance was not like the way it use to be. I did find working out helped a lot . If you go to the gym use the machine with cable weights and lift what you can with one leg up. Make sure to switch up the leg.
Jane :)

str8testshot

  • New Member
  • *
  • Posts: 6
Re: A tiny grumble
« Reply #23 on: September 05, 2012, 07:47:57 pm »
I had nearly continuous vertigo for months, even in my dreams, yuck!  then I had the magicians at house make it disapear. day2 vertigo gone, the wobbles are easy for me I just keep moving, eat well and monitor my sleep! 2 months post op barely a wobble unless I'm tired  or have too many drinks.  If I feel like I need to rest and ignore it , I start to wobble. miss a meal or eat junk for a day, wobble.  lay around for a couple days, wobble. smell red wine, wobble. walk in the dark, run into stuff.  I put on a  ;D and keep moving. as for driving I started back at 5 weeks post op when I felt like I could turn my head and not wobble  :) or get confused and I planned my routes away from traffic and worked my way up from an 80 year old driving style to a 50 year old driving style and will stick with that just in case ;) 
Feb/2012- started spinning, March found 4 mm (L) AN, May tumor was 5mm, Reasearched over 100 articles, saw 11 Dr's, tried out sudden hearing loss, first experience of prednisone-hearing came back, opted for Middle Fossa at HEI Friedman/ Schwartz- no more spinning hearing is %100
 I am a lucky one :)

Sam Rush

  • Sr. Member
  • ****
  • Posts: 282
Re: A tiny grumble
« Reply #24 on: September 06, 2012, 10:35:17 am »
I am 8 yrs post op and still very wonky. I hate it when I am walking on the trail and strangers ask me if I'm alright!!!
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: A tiny grumble
« Reply #25 on: September 17, 2012, 08:46:30 am »
Thanks all for suggestions, comments, and testimonials.  It's good to know I'm not alone.

To add to the mix, I now have a 3 month old puppy but I think when I have to concentrate on something other than myself things are better. 

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: A tiny grumble
« Reply #26 on: September 17, 2012, 10:32:39 am »
Karen,


Cleaning up after a puppy will distract you alright and give you plenty of puppy love as well! Excellent idea!!

I highly recommend some pet therapy we have used it here at the facility for 20 years! It encourages socialization skills and lowers the heart rate in children and adults. In the elderly, particularly homebound adults it has been known to extend their lives.


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!

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: A tiny grumble
« Reply #27 on: September 19, 2012, 03:09:48 pm »
Mike

At this point in time, a week and two days into owning this little guy, I'm not so sure I want to extend my life.   ;D  What a handfull this 8 pound puppy has turned out to be but you're right pets are a wonderful thing to have, so much love.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: A tiny grumble
« Reply #28 on: September 20, 2012, 10:44:48 am »
Karen,

I am jealous! So much unconditional love you will get from a puppy. My dog is 10 years old now, but still acts like a puppy! I have trained her and she is very smart and will do tricks for biscuits!

 I got it as a companion dog for my wife initially but it became a companion dog for my other pomeranian who passed away in March of 2011. Before I new of my growing AN.....Sometimes God gives us just what we can handle.....I was so upset at finally having to put her to sleep, she lived a good long time 14 years. In fact, we got her for Christmas when my daughter was 6. We registered her with the AKC, her name was La Belle GiGi.

May your dog multiply the love you give it many fold, you deserve it.

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!

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: A tiny grumble
« Reply #29 on: October 09, 2012, 01:14:13 pm »
Mike

Thanks for the positive posts.

I know what you mean about loosing a dog after 14 years, we lost our Rhodesian Ridgeback when she was 14 1/2 years old which is very old for a dog that size.

I don't know if there's any correlation but since we've gotten the puppy when I've gone to a doctor's office & had my blood pressure taken it's been very low; 97/56 & 112/65.  At both offices they asked me if I felt OK; I said yes must be the puppy.

He's growing & getting better behaved every day.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back