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Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 56791 times)

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #165 on: December 11, 2008, 10:06:20 am »
Mary,

what can I add that hasn't already been said?  :-*  Congrats m'dear..... I am so thrilled to hear this news... you know it.

xoxox
Phyl
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Debbi

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #166 on: December 11, 2008, 10:27:24 am »
Mary, I am thrilled to hear that your Goldie is on her way to tumor-heaven (or the other place..)!  What wonderful news and what a great way to kick off the holidays. 

Can't wait to see pictures of the canes - they sound very cool and artsy. 

Debbi, sending hugs your way
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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 #167 on: December 11, 2008, 11:53:06 am »
You all are so wonderful. It is so much FUN to share GOOD news. I feel I received my best Christmas present early. Nothing can top it.

Debbi - I think Goldie has been ornery enough to go to the other warmer location upon her death.  :D

Steve - Now I can picture dueling canes with the geriatric set and I do laugh out loud! I have seen some canes with flasks in them - maybe that should be included. We can sell popcorn and watch the fun!

Feeling relieved and happy,

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 #168 on: December 11, 2008, 01:49:51 pm »
Forgot how to post pictures ....LOL

For those of you who are curious about he canes you can see some of my canes on eBay under MaryBKAZ

Take Care,

Mary  8)
« Last Edit: December 11, 2008, 01:53:29 pm by MaryBKAriz »
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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

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #169 on: December 11, 2008, 02:16:47 pm »
Oh my gosh, Mary, those are great!  I don't need a cane, but I think I want one of each!  I'm going to have to think of someone I know that needs one.  You have definitely found a great outlet for your talent.  Amazing!

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

AJ

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #170 on: December 12, 2008, 04:24:21 pm »
Mary:  I sent this in a personal message, but I don't think it went through, so I'm posting it here as well.

Hi Mary,

I just read your post regarding the Gentimycin injections and also your latest MRI results!  I was very very happy to read that "Goldie" is dying.   ;D   That is wonderful, wonderful news.  I'm happy you're going forward with the G injections and I wish you a very successful outcome.

I had my MRI on Tuesday 12/9 and I'm still waiting for the results.  Did Daspit's office call you or did you have to call them regarding your MRI results?  As you well know, I'm pretty anxious to see what my MRI results show. 

I wish you and your family a very Merry Christmas.  I also hope that 2009 is a good year for you. I hope you begin to feel "normal" once more and that you can start putting the AN and all it has caused, behind you.

GOD Bless,
Annette
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2.5cm AN diagnosed 3/25/08 Barrow Neurological Institute, Phoenix, AZ
Some hearling loss in right AN ear.
Slight Tinnitus and slight imbalance.
CK scheduled for May 28th! Woohoo!

fbarbera

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #171 on: December 12, 2008, 05:27:51 pm »
Hi Mary, Most of my balance problems became intensified around months 2 through 9 after treatment and then gradually began subsiding thereafter, especially after the 1 year mark.  So perhaps there is some possibility that your symptoms will improve with time.  Best regards, Francesco
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MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #172 on: December 12, 2008, 05:47:57 pm »
Hi Annette, Francesco and Steve,

Thank you for the input. You all have given me an upbeat outlook in a week that has been more difficult. What a great gift! I was glad to hear Steve say the TTG is routinely done in Sweden. They wouldn't do it routinely if it were not fairly safe, right? Francesco, I am also very glad to hear your balance issues really improved after the one year mark. It was about a year ago (6 months pre-ck) Goldie started rearing her ugly head by causing dizziness/imbalance and hearing issues. I am tired of this silliness now and am really ready to find my own MISCHIEF. I have had plenty of time to plan for it, that is for sure! :D

Annette, I did get your PM....I sent one back. Let me know if you didn't receive it. You are such a lovely lady and a great inspiration for 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

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #173 on: December 12, 2008, 08:44:22 pm »
Mary -

congratulations on the very swift demise of "Goldie" - boy, that was fast!!!   ;D

May "she" rest in peace and may I also say "Good riddance"  ;)

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

sher

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #174 on: December 13, 2008, 12:33:16 am »
Mary,
I love your canes!!!! How clever
sher
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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #175 on: December 22, 2008, 07:21:05 am »
Hi all,

As you all know this AN ride is quite a roller coaster. My husband took me to get the TTG injection on Wednesday. the doctor showed us the pictures of the ear and where the needle and gentomycin would go. He explained in detail, we asked questions AND of course I wasn't too dizzy. Somehow after all of that we all agreed to wait! I feel good about the decision. It is just so strange how I seem to feel I get myself into the research mode, then make an informed decision then somehow out of the blue, things change. I usually feel a calm resolve once I make decision, like I did before Wednesday, but then Whoooooosh there it goes. I find this diagnosis very impish that way. I have had varying degrees of dizziness and imbalance since then. The doctor explained most likely it would not help the imbalance to get the TTG but would help the dizziness.

The biggest influence was the doctor saying "Goldie" was having the good beginnings of necrosis, probably won't grow anymore now and may start shrinking. He sent me the jpgs of pre ck and post ck. I put them all side by side on the computer. The tumor had visibly grown from diagnosis to Pre CK, a period of only 2 months! This seems like it might be the reason symptoms were getting worse. The photo Post CK was even bigger, visibly obvious. I have no idea how to measure it, but it has grown more than I expected since the diagnosing MRI.

In summary. I feel quite blessed to have had symptoms, then have them worsen quickly enough to be alarming, having a doctor that knew I needed a more expert opinion, and then that doctor knowing to do the MRI with contrast. He sends me to this group of doctors specializing in ANs and be treated by such a great team. I wastreated before it got too big. I had all the choices given to me. I guess, even having the diagnosis, the BLESSINGS are so numerous. It is not malignant!!!! It was caught early. I have a great husband and family.  I have a great team AND have peace of mind even though the path there isn't conventional.

May all the blessings of the season be yours,

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 #176 on: February 01, 2009, 10:20:16 am »
Sorry I haven't posted in awhile. Life got in the way. ;D

THINGS ARE BETTER! YEAH!!!!!! My issues are still there BUT the severe issues are definitely fewer. AND I have also gotten quite used to the tinnitus most of the time. I really feel like I have my sea legs. I am always on the ship but I am learning how to travel with it most of the time, (none too soon ). So I have been doing better.  :)Grocery shopping, greeting card shopping, etc, are still very difficult physically. Fighting the dizziness there seems to be hardest for me. It is like I ran a marathon. BUT I know I am doing better because I am not having to go to bed at 8 anymore.

It looks like Weldon's 93 year old father will be moving it with us. My Mom, 88 is living with us still. It should be pretty interesting with my mom who can't hear well even with hearing aids and his dad who can't see well even with glasses and me who can't walk straight even with a cane. We also have a senior aged dog and another who is no spring chicken. Put all that together and stir into the mix Weldon is looking for a job. I am really glad I am learning to adjust to my new normal or this could REALLY be overwhelming. :o

Hope all is well with everyone here. I will try to touch base sooner next time.

BIG HUG!

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

sher

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #177 on: February 01, 2009, 08:14:45 pm »
Hi Mary,
I am glad to hear that things are better for you. Sounds like you are going to have a house full.
I myself am still awaiting the sea legs. I am getting very discouraged and sometime wonder if I should have done surgery and had the balance nerve cut, instead of wondering what you are waking up to each day. Sorry,,,, needed to vent. How is the weather in AZ? I was in Vegas last week and it was so warm... not liking the snow at this point. The airport was quite challenging for me getting to and from the gates. A year ago, I never would of dreamt I would be feeling this way. Hearing a your good attitude is really a help to me.. Thank you!!!!!
Sher
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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #178 on: February 02, 2009, 09:05:55 am »
Hi Sher,

Hang in there.....you are 3 months behind me and 3 months ago I was still really struggling. I know we all aren't on the same schedule with these ANs but it does seem that within the first year, things get better for most of us that suffer these side effects. I remember seeing Steve in September and he was doing so well, I thought I would never get there. All I can say is I seem to have adjusted to the symptoms. This is so confusing and alarming at times it seems insurmountable, I know. Just want you to know life does get better. I think for me it was none too soon. :D Patience is not my best virtue and waiting MONTHS to adjust seems out of line for a benign tumor. "Goldie" wouldn't let me bargain with her, though. It was on her own sweet time.

Take care and I send you a big hug!

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

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #179 on: February 02, 2009, 01:50:03 pm »
Hey Mary!  SO good to hear from you and SO glad you're feeling better!  Kudos to you and Weldon for being able and willing to have your folks come to live with you guys.

Hope your dizziness continues to get better!

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
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