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Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 56800 times)

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #135 on: July 28, 2008, 10:55:06 pm »
Quote from: Debbi on July 28, 2008, 08:25:24 am
Debbi, couldn't dance before surgery either...

You're not alone on that one, Debbi  ;)

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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 #136 on: July 29, 2008, 06:10:22 am »
Quote from: MaryBKAriz 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)

Will loan you my fashionable purple paisley cane for the 3-step, if you want.... it does make quite a fashion statement!  ;D

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

pauline

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #137 on: August 04, 2008, 10:50:32 am »
Mary - you are awesome!   Thank you for the posting the wonderful pictures and sharing your journey thru cyberknife!  I am a newbie from PHX and considering cyberknife at Barrows!  I just wanted to let you know how much comfort you have given me thru your posts!   Keep COOL!!!
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Pianist & Piano Teacher
Diagnosed 6/27/08
Watch and Wait

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #138 on: August 04, 2008, 06:45:17 pm »
Hi,

The 2nd was my 2 month mark and I felt the BEST I have felt in weeks. I always hate sayng this, because it seems I then go backwards. BUT I had a pretty long stretch of a number of days with being quite dizzy now followed with numerous days of not being very dizzy at all. This is the longest stretch feeling this good. I have spent most of today not even knowing where my cane was and not caring!!! ;D I also hate to say it, but I did not do my vestibular exercises while the family was gone.....not at all. I know they had helped so very much at the beginning, but I think I may have been pushing too hard and getting myself over dizzy?  So I am going to go by instinct now. If it starts getting worse, I won't try a full course press, but easing into the exercises.

Thank you, Pauline.....you made my day!

I am so glad my posts helped. I am soooooo impressed with BNI and you will be in good hands if you go there. If you want any more info, feel free to PM me.

Take care,

Mary 8)


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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

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #139 on: August 04, 2008, 09:10:47 pm »
"...numerous days of not being very dizzy at all."

That sounds like great news, as well as being a good example of what a "new normal" is all about.

I suspect that the exercises did help some in getting there. Hopefully you can find the right amount to keep you tuned up, without getting all dizzy again.

Glad to hear you are doing well!

Steve
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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 #140 on: August 04, 2008, 10:56:02 pm »
Quote from: MaryBKAriz on August 04, 2008, 06:45:17 pm

The 2nd was my 2 month mark and I felt the BEST I have felt in weeks.

Wonderful news, Mary!  Keep up the good work!  ;D

Jan
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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 #141 on: October 16, 2008, 11:12:34 pm »
Hi Everyone!

I am back from our long, but terrific RV trip to the NorthWest. Fabulous area!

THANK you so much for all your support. I have missed everyone and thought a lot about how grateful I am to have such great support. I will try to catch up with what is going on in your lives in the next few days as well as post a photo of Steve with us. It was so wonderful to meet him, our wonderful moderator.

My 4 month post CK anniversay occured while away. I was dealing with wonky-head and found it VERY interesting traveling through the light and shodows of the redwoods on small windy, hilly roads in our motorhome! ;D My Internist had encouraged me to take the trip even though I was dizzy. I can be dizzy at home or as I see the wonders of our country. I am so glad he encouraged me! What a great way to get vestibular exercises! I feel more symptomatic again, but Steve encouraged me by saying his worst times were the 3 - 6 month time frame after CK. My thinking is that the tumor may be at it's most swollen state during this time??? After 6 months a person probably also adapts more to the new scenerio.

I am using a cane almost all the time. I find it so much easier. I had been using a very old wooden cane I had gotten after an injury in the late '70's. It wasn't as spunky as I want to feel so I now have a new cane and it is nicer, so I feel more uplifted. That is an artist for you!

Please take care all and I will look forward to hearing how you all are doing and what has happened while I was away.

Take care,

Mary 8)
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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 #142 on: October 17, 2008, 06:07:17 am »
Mary -

great to hear from you.

Sounds like an incredible trip  ;D

I was just wondering last night what you were up to - and when you'd be posting that picture of you, Steve, and Weldon.

Jan
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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

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #143 on: October 17, 2008, 06:53:26 am »
Mary!  Hey!  So glad you're back - but glad you were able to take such a great trip!  Like Jan, I too was wondering about you just last night...

Sorry to hear you're still experiencing the dizziness, but good to know it's not keeping you down!

Cindy

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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

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #144 on: October 17, 2008, 10:16:00 am »
Mary~
OK...I have to admit that I didn't think about you last night, but only because I went to bed very early!!  Glad you are back safe & sound and had a wonderful trip!

K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #145 on: October 17, 2008, 12:08:56 pm »
Hi Kay, Cindy and Jan!

It is so good hearing from you! :)

K, how are things going for you now that you have some time under your belt, post surgery this year?

Cindy, Where are you having your surgery? I will put November 7th on my calendar and be thinking about you. Please let me know how you are now?

Jan, Have you gotten adjusted well to your BAHA? Would you still do it if you went back in time knowing what you know now?

Take care,

Mary 8)
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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

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #146 on: October 17, 2008, 03:51:36 pm »
Photos have now been posted under AN Community!
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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 #147 on: October 17, 2008, 05:59:20 pm »
Yea!!!  Going to check them out right now.

BTW, yes I would get a BAHA if I had to do things all over again.  It's been about 4 1/2 months since I was able to "hook up" my processor - and I'm still ecstatic on a daily basis about it  ;D

Also, BTW, don't know if you've read about it, but Lori had the 7-12 jump surgery a few weeks ago.  From all her reports though, she still can't jump  :D  ;)

Jan
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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 #148 on: October 17, 2008, 06:53:09 pm »
 :D
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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

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #149 on: October 25, 2008, 09:55:58 am »
My first follow-up appointment is Wednesday afternoon at 3. I am sure we will schedule the MRI. I am so curious about that. I am not worried, but interested. What has Goldie been up to since being zapped?  I am wondering what he will say about my balance/dizzy issues. I feel mild vestibular exercises help but at some point they cross over and render me useless for a day or two. I may want to re-address cutting off my balance on that side. I do not want to do the full AN surgery though. Right now, balance and hearing loss with tinnitus are my main symptoms.

At 4 that day (in the same area) is an AN support meeting for the Phoenix area. The topic is BALANCE! How lucky is THAT? I will be front and center. The doctor (who read my vestibular test results done in his clinic) I never met but I am most interested in hearing what he has to say.

Yesterday all of a sudden I went majorly wonkyheaded. Do others have it hit like that? The two days previously I felt pretty good and had even done some reorganizing of my bedroom closet. It felt so good. I did not feel like I overdid it. I took breaks, and even was thinking I am learning to deal fine. So yesterday I had time to contmplate, why do I have more balance issues than usual? Is it because Goldie totally fills the canal? My tumor is not that big. hmmmmmmmm


More next week after the appointment and meeting. I do not know how to thank all of you enough for your support. I am glad we have each other.

Mary 8)
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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
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