Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 46040 times)

MaryBKAriz

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Hi,

It seems so many are leaving a lot of details as they go through surgery. I have found it very interesting and feel a part of their cheering squad. There are SUCH great people on this site!!

I haven't seen as many things about CK. Sooooo, I am going to send you information as I go through this journey.

I was diagnosed late March, did a LOT of research, talked to numerous specialists in ANs and have decided to go with Dr. Daspit and Dr. Kresl at Barrow Neurological Institute. My team has done HUNDREDS of these with great success. I like both Drs. very much. Dr. Daspit I saw first and he laid out all my options. I could watch and wait, I could have GK, I could have CK, or any of the three types of microsurgery. He explained all of them the benefits, side effects, procedure processes, etc. I REALLY appreciated the respect he gave me by not pushing me one way or the other Dr. Daspit is a long time AN doctor (and said I needed to get on this site by the way) He is out of House. Of this stage, I need to say at first this can be quite overwhelming. I suggest strongly to do research, get the booklets from the ANA ask questions, stay in touch with the good people here. I avoided googling hits that came up with things like on Billy Bob's AN experience. I did look at the Mayo site, different hospital sites, etc. There is NO HURRY! I wanted to feel comfortable that I made the right decision for me..

Dr. Kresl is the CK radiosurgeon who will treat me. I didn't see him until few weeks later. In the meantime I had talked to another specialist here in town who only does one type of AN treatment and only one ind of surgery, and guess what, that is waht he recommended. He is NOT wih Barrow. I had talked to the Barrow Neurological surgeon who would do microsurgery, if I chose it (who recommended radiosurgery, by the way!) By the time I did see DR. Kresl, I was leaning towards CK, but didn'y let him know that. He did come back with that recommendation. He does BOTH GK and CK.

Once I decided on a treatment, a couple of weeks ago, I was scheduled for my CK about 4 weeks later.  Last week I had a blood test for the MRI to make sure I could get the contrast. (if I understood that correctly).

So today I go in to get my mask made. The mask will hold my head steady during the 3 consecutive days I will have the radiosurgery. (June 2, 3, and 4th) Each time it will take up to about an hour. It is fractionated as opposed to the GK one day process. There are no devises screwed to the head. I will get a CT scan also today with my mask on and then I will go get a specialized MRI. I have worried about claustrophobia, as many on this site know. I have been given lorazapam for anxiety so I feel I will sail happily ala pirate fashion (If you have no idea what I am talking about go to the "Good Morning"  thread under AN Community on this site). I feel a little nervous about today, but not too bad. It is an adventure in my life for sure and my dear husband has been at my side through out.

I will let you know how it goes. Have a great day, dear people.

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

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #1 on: May 20, 2008, 01:23:46 pm »
Mary

FYI... see link :)

http://anausa.org/forum/index.php?topic=3929.0


Congrats Mary on rockin' and rollin'! sounds like things are all set and I know you are in fab hands at Barrows!  I am SO cheering you on and sending those wellness hugglez to you! You're gonna do great! :)  Plus, "happy pills" help the cause! ;)

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

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #2 on: May 20, 2008, 01:38:11 pm »
Hi Phyl,

That is a GREAT thread!

I DID forget to say I accessed the CK support site, also. WOW, it is great! I asked questions of the physicians there and they were answered so quickly! I do not know how those doctors do it. I also asked DR. Chang of Stanford questions in emails and he answered them all for me. One thing I HAVE to say is the AN support is terrific!

Phyl, I am so glad you are cheering me on. I send many hugs to you in appreciation. :) You are a dear person!

Take care,

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

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #3 on: May 20, 2008, 05:59:14 pm »
naw, I'm just being me.... glad the thread helped!   Hoping you will add to the thread once your CK is done! :)

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

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #4 on: May 20, 2008, 09:53:34 pm »
Mary -

thanks for starting this subject.  I don't know much about CK and am very interested in learning more.  I'll have to make sure to follow your posts.

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

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #5 on: May 20, 2008, 10:10:39 pm »
Mary,

We'll be with you every step of the way.

I'm feeling guilty, when I went to that thread Phyl posted, I noticed that I posted several times before treatment, and not once since.  :-[

I should probably add my own account - maybe I can post my cyber-man pictures again.

Best wishes,

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.

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #6 on: May 21, 2008, 06:03:18 am »
Pls do! :) That's why I started that thread! :) The more experiences noted there, the more folks have for their research efforts.

Phyl

Mary,

We'll be with you every step of the way.

I'm feeling guilty, when I went to that thread Phyl posted, I noticed that I posted several times before treatment, and not once since.  :-[

I should probably add my own account - maybe I can post my cyber-man pictures again.

Best wishes,

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

Tamara

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #7 on: May 21, 2008, 09:10:03 am »
Best wishes, and I hope the happy pills do their job!

Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #8 on: May 21, 2008, 10:59:01 am »
Hi,

I REALLY appreciate the well wishes. I find this site so reassuring!!!!

I got through yesterday with flying colors, may I say! Everything was either on time or early. It ran like clockwork. There is no doubt they know what they are doing and everyone was kind and very informative! My husband and I arrived mid afternoon, parked in their special convenient password-only parking lot. That i a first very nice touch. The parking garage is FAR away!

I first went to the CT scan room. There on the table was a mask already made and my perfectly flat mask. The one that was to be done for me by the technicians. She put hers on for me to show me what it looks like. It was firm and you could see the face imprint on top. Then she showed me my mask telling me it would be soaked in very warm water making it malable. I was to lay on the table and had a special CK "pillow" that held me head in place. She put in an IV which is always an issue with y non-existant veins, but I am so used to that I had no trouble with that.

On the table were attachment places beside it for the mask. I was to close my eyes as she stretched it over my head. (It was hot like towels in a spa, but the texture was more like stretchy tight fish net stockings....very strange but not unpleasant at all.) I could see through it fine once it was on, although most of the time I shut my eyes. A nice touch also, they had a photograph of sky and clouds backlit on the ceiling. Quite peaceful looking.

As I said the mask started out flat - looking something like a disposable vacuum bag before use. After she stretched it over my head she attached it and sent me through the CT scanner as it was drying (and tightening). By the time the scan was done, it had solidified into the imprint of my head and looked from the side like a new version of the old movie, "Alien". OOOO how proud I am! ;D Being claustrophobic, I was worried ahead about being "stuck" in the tight mask. I had a moment at the beginning I had a moment of panic that I was able to short circuit by overloading my brain (I did not notice any effect of the "happy" medicine after I took it). After I kept my mind going in more positive direction this part was not too slow, so I managed quite well. She then called MRI and they got me in earlier than the appointed time. She escorted us over there and got us started on that process.

I do NOT like MRI's. I was determined I would get through this. This is a specialized MRI just for the head. It is the small tunnel quite snug. The good news and I was pleasantly surprised, the lighting inside it was just right, the soft breeze was calming AND it had a window to see out. It really was mirrors, but I could see the technician throughout the procedure. Ib the long run it was easier for me than the open MRI with no way to look out. She also took me out between scans when I asked as opposed to the guy who argued with me at the last one. This one had padding on each side of my head and held it gently plus there was a helmet placed over my head. The helmet is very close to the head, but you can see through it fine.

The scan was only done on the tumor area of my brain so it was about 15 minutes total of scanning. I asked for earplugs because I was told this is particularily loud. I found not only did it help with the noise level but it also felt comforting like swimming underwater sound. This is what I did to keep me calmer. First, during the long 10 minute scan I counted slowly to 600 (I was only off by a couple of seconds when it ended). If my mind started wandering at the same time i was counting, I'd look out the window or close my eyes. In addition I tried to think what the sound reminded me of. DON'T LAUGH....with the earplugs, the machine sounded like a huge cat purring. I said DON'T laugh. No it was not the happy pill, either. It didn't seem to do anything. I just like to have my imagination tapped into and combining that with my counting kept me from staying in a panicky feeling when they did strike.

So we were finished after that and we went out and had a nice dinner, just the 2 of us. Nothing like a romantic evening to the BNI and dinner.

I wanted to take photos, but the technician didn't know if it was allowed, so instead I wrote in details. Sorry about the length, but those wanting details, I hope it helps. Next week I go see Dr. Daspit for pre-treatment appointment. I can ask my last minute questions, if you have any suggestions let me know.

Proud Mary keeps on..... ;)


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

er

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #9 on: May 21, 2008, 11:21:25 am »
Congratulations on your trip,

I have no knowledge on CK, but that was interesting what you experience. Thank you for the detail journey.
What is the mask for?  You said the mask will hold your head steady during the 3 consecutive days you will have the radio surgery.
I just hard to picture, I am visual person.
eve

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #10 on: May 21, 2008, 11:30:13 am »
Hi eve,

this is what my CK mask looked like on... just disregard the face behind the mask.

Phyl

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

er

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #11 on: May 21, 2008, 11:32:52 am »
thank you for the fast response.
wow!
 and are you awake through the process?
eve

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #12 on: May 21, 2008, 12:04:17 pm »
eve, just call me "Quick Draw McPearl...."  (ok, you older folks, think back on that one!) :)


Yes, wide awake. I was on Ativan to "curb the edge" but actually, I napped through it.  I sleep through MRI's, dentist's drills and I napped through the CK treatment. 

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

goinbatty

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #13 on: May 21, 2008, 02:13:54 pm »
Hi Mary,
Glad to hear things are moving right along for you.  I've 4 months out from CK and doing fine.  When I went through it, I kept my eyes closed most of the time.  Didn't require any meds but just focused on the music playing in the background.  By the end of each session, if they had kept it up a little longer I would have been fast asleep.  Out of curiosity, I opened my eyes twice which was a mistake for me.  The eye was right over my head and for some reason, it got to me briefly but actually just enough to get tickled at myself for my reaction.  It looks odd staring right at your head.  So just relax and dream about lying at the beach soaking up the sun and you'll be fine. 
Good luck!
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

AJ

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #14 on: May 21, 2008, 02:23:50 pm »
Hi Phyl!

This is Annette, I'm Mary's fellow AN'er from Arizona. We've become really good friends and have been supporting each other through this AN journey.  I'm having CK also and I've got a question for you.  I see in your pic that you have long hair.  Did you have long hair when you had the CK performed?  If you did, what did you do with it on treatment days?  I have long hair and when I went to get fitted for the mask, the tech tucked my hair into my blouse.  That was okay for 5 minutes but I know I will not be able to stand that for anytime more than that.  I'm seriously considering having my hair cut as I go in for a dye job tomorrow.  Oh, and is it okay to dry my hair so close to CK treatment (starting next Wed.)

Thank You!

Annette
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!

 


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