Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 52475 times)

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #120 on: July 13, 2008, 02:06:17 pm »
Hi Cindy and others,

Today is my Mom's 88th birthday so the kids will be over and my son doesn't work weekends, so he has the kids, until we all meet to celebrate later. My sons kids spend every summer here, since their parents are divorced, Mom in TX, Father here. We get them everyday and they have been so sweet to me.

I am quite dizzy! :-[ Yesterday and today both. I really would like for this to improve more and permanently. No sooner than I am thrilled to have a trend towards improvement, than I again backslide. I will defeat the beast eventually but I am getting impatient.

How are you doing?

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #121 on: July 13, 2008, 04:44:03 pm »
Mary-

Happy 88th to your mom!!  Hope you all have a wonderful day.

So sorry to hear about the recurrent dizziness.  I somehow managed to avoid that particular symptom, although I do continue to have balance challenges.  I am sure it is exhausting to have the dizziness - it has to be a lot of extra work for your brain. 

Be patient with yourself, Mary.

sending you a hug!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #122 on: July 14, 2008, 07:30:45 am »
Hi Debbi, :)

Hug was received, appreciated and reciprocated! Thank you sooooo much. It helps to have such support. Hooray! Good luck with yoour Blinkese appointment. I am looking forward to hearing about it. I have to love the name. It sounds comforting and fun at the same time.

Mary  8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #123 on: July 14, 2008, 11:11:44 am »
Thanks, Mary!  I managed to get an appointment first thing tomorrow morning (someone cancelled - yay for me!) so I will be there bright and early to get "fitted."  Hopefully he'll also have some additional tips for me in terms of keeping the eye lubricated.

Hope you have a non-dizzy day!  And, thanks for the hug - coming back at ya...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #124 on: July 14, 2008, 12:21:31 pm »
Any better today, Mary? 

88th birthday for your mom, how great!  Very special that your grandkids have a great grandmother still living.  Hope my boys have children while their grandparents are still with us...but, don't want those grandkids too soon, though!

I'm just waiting around for my MRI in August...still absording things on the forum - it's all still so helpful, especially with you, Debbi, Pooter and many others continuing to let us know how things are going post treatment. 

Here's to less dizzy days for you!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #125 on: July 16, 2008, 10:12:16 pm »
Hi all,

My last couple of days have been better. My PT was impressed. HOORAY!!!!!  ;D

In one exercise I use very, very wild and too colorful wrapping paper with "B's" written on a little white paper taped to it in 2 places. I look at this and my eyes and head are to go back and forth between them repetitively. Sometime I really think I am on some Punked type show. It is as if I am being tested to see what inane thing I will do in my gullibility and desperation to get better.

Cindy -  good luck with your MRI in August. Keep me posted, okay?

Mary 8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #126 on: July 17, 2008, 07:01:33 am »
Mary-

My eyes hurt just reading the description of the paper!!  Yikes.

Cindy, hang in there, and definitely keep us all posted on your MRI next month.  Is it on the calendar?

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #127 on: July 25, 2008, 01:43:14 pm »
Things are better!!!! I am overdue and update.

I am not quite as dizzy. I still use the cane and most of the time I feel like it is improving. I think I am now at 3 steps forward, 1 back. Hooray! I hope it continues and my patience hasn't been my long suit, so I feel tested in this respect.

I have been swimming laps almost every day. This is when I feel just like the me pre AN symptoms. I still have the ringing ears, but I can pretend that is pool noises. I have no issue with dizziness, because I know the water won't let me fall. We have a salt water pool also that seems to keep me bouyant even more. I almost feel powerfull in there. I don't need the cane and my AN, "Goldie" is reminded who is really in charge here. I know she is dying, anyway.

The grandkids are still here and have been ultra sweet and amazingly well behaved. I know I am not as much fun as in the past. I can be a pretty silly Granny and enjoy the kids at their level. I guess that can be scary thought but believe me, the kids and I have had a history of fun. Next year when here for the summer, I will try to make it up to them.

We (husband, my mom, 2 dogs and I) are still hoping to go on our motorhome trip to Oregon this fall. I am keeping my fingers crossed that the symptoms don't get too much worse.

Basically happy camper,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #128 on: July 25, 2008, 05:55:26 pm »
I think I am now at 3 steps forward, 1 back. Hooray!

Excellent news, Mary!  ;D

Thanks for the update!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #129 on: July 25, 2008, 07:17:44 pm »
well, Mary... I was going to loan you a pair of waterwings for pool exercises, but things are coming along "swimmingly" for you! (hit me later for that!). I'm so thrilled for you... and you know my mantra... "day by day, inch by inch..."..... you're doing great and I'm tickled to hear this update.

Hang in there, m'dear!  I'm so proud of you!  (and all of you as well... )

xo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #130 on: July 27, 2008, 05:01:51 pm »
Hey Mary,

I've been gone all week, but so glad to return here and see that things are better for you and the dizziness has lessened!  Sure hope it continues to subside.  The swimming sounds heavenly and certainly seems like good "medicine" for you.  We will all cross our fingers that you are able to make the Oregon road trip - I'm feeling pretty confident that you'll make it!

cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #131 on: July 27, 2008, 06:38:40 pm »
I think I am now at 3 steps forward, 1 back.

So that would mean you've moved on from the waltz to the polka, right?  ;D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #132 on: July 27, 2008, 06:42:44 pm »
I think I am now at 3 steps forward, 1 back.

So that would mean you've moved on from the waltz to the polka, right?  ;D

Steve

HAHAHAHAHA  :D
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #133 on: July 27, 2008, 07:30:24 pm »
I used to love to dance......oh my what kinda step would that be with a cane! :D

Mary 8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #134 on: July 28, 2008, 08:25:24 am »
That would be a three-step, Mary!   ;)

Debbi, couldn't dance before surgery either...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com