Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 46161 times)

AJ

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #15 on: May 21, 2008, 02:28:12 pm »
Mary, my dear friend!!

You did well.  I knew you would.  ;D   Thanks so much for being my support.  My family is there for me, of course, but they do not understand what I am experiencing, like you do.  I'm glad the balance exercises are helping you and that you've been feeling better of late.  Keep up the good work pretty lady!!

Talk to you soon, next week is a BIG week  :o

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!

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #16 on: May 21, 2008, 03:02:59 pm »
Oh I am so glad to hear from all....Thank you!

Yes, I am thrilled I have been given the gift of a new friend because of this diagnosis. Good things come from every experience!!! Annette has been a true gift in my life! THANK you Annette. She is forging my path AND at the same place with the same doctors. Thanks Phyl for posting your mask photo. I love that picture.

Annette, I am cheering you on, as you know. Remember if you need anything...call me. I feel so great having you here.

I don't know about the hair. I got mine cut just recently so it was not an issue. Can you wear 2 layers, tucking your hair between the layers, then look down, giving it a little slack before the mask is put on???? By the way I love the color of your hair.

Thank you, also,  Steve, Jan, Sandra, Tamara & Eve - It helps!

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

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #17 on: May 28, 2008, 07:59:14 pm »
First I have to say, you go girl to AJ!!!!! It is her first CK day. Sounds like she is preparing for tomorrow.!

I need to tell you today started worse than most. I am dizzier today and my tinnitus is really acting up, but we saw my lead Dr. today, Dr. Daspit. It is my pre-zap appointment. I am so glad I have such a good team. I needed to sign some papers, I asked some questions and he asked some questions. I told him my balance was getting to be more of a problem. We discussed that and some post treatment options. Then he asked if I thought my hearing had gotten worse. I have thought the first test his office had done was better than I expected, anyway. When I told him I thought it was worse, he did another test and after it was finished he informed me my hearing was no longer worth saving in that ear.

Next thing, BOOM, he was suggesting I switch from Cyber Knife to Gamma Knife.  The reason for fractionating it in 3 dosages over 3 days was for saving hearing. That reason is gone. Gamma has been around longer, so it statistically is more conservative route. Now, we have the mask, the appointment, the mindset one way and WHOOSH it is changing in front of me. After many questions, answers, thinking by all 3 of us what was finally decided was to do Cyber knife after all but only ONE stronger treatment, so it is similar to GK in its dosage. So Monday is my ONLY day. I think by the end we all felt this is the right way to go.

Now back to my hearing and balance.  Earlier he had given me a prescription for vestibular therapy. That was before the hearing test. then after treatment, we will re-assess but he was talking about destroying my cochlea so it would hasten my balance issues to a head and I can start recuperating some alternative balance techniques. I of course will have absolutely no hearing if this is done, so if this all happens I may have the BAHA implant to send sounds on my right side to my good left side. He only touched on that but because of this AN site I knew what he was talking about.  ;D

I will get Mary back, in the meantime, like. Like Arnold says, "I'll be back". There is too much mischief to be attended to.

Happy sailing

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 #18 on: May 28, 2008, 09:50:08 pm »
Gee, Mary, you are just full of surprises, aren't you  ;)  Talk about changing gears!

I don't know much about GK vs CK, but from what you explained in your post, I think you made the right choice.

Good luck on Monday.  Don't worry about the SSD - as you know, lots of us here have that issue - and the vestibular therapy will help with your balance.

Best of luck to you, too, AJ.  Let us know how things go  :)

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 #19 on: May 28, 2008, 10:29:45 pm »
Mary,

Sorry to hear about the hearing. I can't remember where it was before. Is it really too far gone to save?  ???

I have seen several times on the CK forum Dr. Medbery indicate that if the hearing can't be saved, GK and CK are the same, and either one will work fine. I have also seen reports of people getting CK in a single shot, in situations where hearing preservation is not in the cards. So it all sounds reasonable to me.

It is the case that half a balance nerve is worse than none at all. The scrambled signals just make matters worse for the brain to try and sort out. With one side completely gone, the brain can retrain and do pretty well. You weren't planning on joining the circus, were you? Just read Water for Elephants instead. :)

Daisy Mazey was very pleased with herself when she re-learned not only to ride a bike (even Jan has done that  ;D ), but went free-hand down a stretch through an orchard. She posted a picture to prove it. So you will recover some pretty good balance, and lose the dizziness as well. Hopefully by September.  ;)

Best wishes, we'll be watching for your one day report next Monday.

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.

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #20 on: May 29, 2008, 09:07:44 am »
Steve and Jan,

Thank your replies, it always help to know people who understand are our there a mouse click away.

I woke up feeling better this morning - YEA! So I cleaned the refrigerator. Maybe I don't feel as good now. :D

Steve, I have done some experimenting with my ear. I do have some hearing BUT I only understand at best 2 in 10 words. I don't have a clue where sounds are coming from. It is too weird. I listened to canned telephone message the other day while I was on hold. My good ear, it sounded perfect, the other ear it was faint but so distorted it sounded like static. This was the first time I noticed faintness in the sound. Last year at this time I had 100% word recognition in both ears! The change has been interesting to adjust to, but if the loss in that one ear is the worst of my problems after the dust settles, it won't slow me down much. I havr too many role models here forging the trail! A bicycle is some challenge.  :o

It also good to know that DR. Medbury is saying the same thing. My hubby, Weldon, was very listening to the tech talk better than I was, I was still in emotional "whoa" mode! ;) But we do feel good about it and the doctor explains and answering questions well. I really feel I am in great hands. Hooray!  ;D

Jan, you get your processor next week. I will be thinking about you.

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

elliemae

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #21 on: May 30, 2008, 02:29:50 pm »
Hi, Mary
Lurker elliemae here....I've been eagerly following your story as I try to decide about which treatment I want. I am interested that your Dr now suggests GK instead of CK when only one dose is needed.  I had a CK consult a few weeks ago, and since I have no hearing in the AN ear, was told that a one-shot CK would work for me.  (This center does not do GK).  However, after the fact, I started to wonder if the 3-shot CK would be less damaging to other areas, and called back with the question.  Dr's answer was "possibly", but the difference was not really measurable;  he said if I decide on CK, we can talk about options.
 
So, I'm still wondering about that and I look forward to hearing the rest of your story!
Wishing you good luck on Monday!
Elaine

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #22 on: May 30, 2008, 02:47:59 pm »
Wow, Mary, the time is here!  In case I don't get a chance over the weekend, I wanted to wish you the best.  Will be looking for your updates after the procedure.  I'm really getting jealous of all of you brave souls that have made treatment decisions and are forging ahead with those chosen treatments.  Way to go!

Thinking positive thoughts 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 #23 on: May 30, 2008, 04:33:14 pm »
Now that the dust has settled from the last appointment, I am doing better. Since Wednesday when I had the surprise revised 1 day CK or 1 day GK option my head is swimming but that is same-o, same-o with my "wonky" head.  :D 

I think the Doctor would have gone GK if I had presented with the hearing loss at the beginning. I would guess saves the CK robot to attend to other patients, since it treats more than head maladies. The first time he saw me on one of my best days. At very best now I would guess I have 67% loss. Since I would have to start all over and reschedule the WAIT again it seemed best all the way around to stick with CK but go to 1 day.

WEIRD OCCURENCE 9,987 - For some tome, I seem to fatigue all of a sudden. So I laid down on the couch on my good ear to just relax a bit. News was on TV and my good ear was on the pillow. FOR SOME reason I could understand most of what was being said. I know my hearing vacillates, but it seems to do that between bad and down right totally dysfunctional. I started questioning my decision. It lasted like that until the commercial. I couldn't understand ANy of the commercial and when the news came back on it was back to very bad. I have never noticed it changing that fast before. I know these AN's are little rascals, but my AN, "Goldie", seems to really get mischievous. Anyone else having this happen? ???

Cindy and Elaine. I am cheering you on, also. Making the decision has to be the hardest part. I have felt quite a bit of relief since scheduling this.

Annette, Hope your last CK treatment went well today. I have been really thinking about you!  :)

Take care everyone,

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

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #24 on: May 31, 2008, 12:32:55 pm »
Hi everyone,

Day after tomorrow and i have the CK. Time did pass quickly, and I am glad! ;D Today instead of my occasional twitches (often in lip and eye on AN sight) I am having eye spasms? I guess that is what I would call it. My eye closes about half way for a few seconds. Last couple of days have been weird symptom days. Perhaps because of the adreline, knowing the CK is soon?

Hope all is well for everyone today.

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

AJ

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #25 on: May 31, 2008, 02:40:40 pm »
Hi Mary,

What the heck is "Goldie" doing to you lately?  I'm sorry to hear what it's been putting you through.

 I'm sure you are anxious and excited about Monday's appointment.  I mentioned your name to Amanda and told her how we met.  You'll do fine Mary.  Just remember to take deep breaths and relax.  Take time getting comfortable in that mask.  Make sure your nose and chin are in there correctly.  First day, the tip of my nose was turned up a bit, second day my chin wasn't in the mask all the way.  If you get a headache afterward, take ibuprofen, Amanda said it works better than acetemetophin because of it's anti-inflamation properties. 

Please know you'll be in my thoughts.  And I'll pray Dr. Kresl zaps the heck out of Goldie.  She needs to go away and leave you alone now.  I'll be in touch!

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!

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #26 on: May 31, 2008, 03:34:09 pm »
Mary~
Peaceful thoughts to you & Weldon in the next few hours and days...I will be saying special prayers for you both!   ;)

K
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 #27 on: May 31, 2008, 05:41:37 pm »
Hi everyone,

Thank you for the support! I know it helps. Time is passing faster and it will be Monday morning soon. For those others who are going through surgery/treatment - I wish you best of luck this coming week, too!

Annette.......you are a POSTIE!!!!!!!!!!!!!! Congratulations for getting the CK behind you. I knew you would fly through with flying colors. I am glad you have had some time to rest and are taking care of yourself. You are a superb lady and I am so blessed to have you as a friend. Like my "kids" say, "you rock"!

Kay, I really appreciate you. Maybe I should say you "Round Rock"! (for those of you who say, "huh" - we both had lived in Round Rock, TX.

Hugs,

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

Kaybo

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #28 on: May 31, 2008, 06:53:43 pm »
Mary~
I like the Round Rock except that I have tried really hard the last few months to get rid of my "roundness"!!

K
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 #29 on: May 31, 2008, 10:47:25 pm »
Hi Kay,

I wanna get rid of roundness....how are you doing it?? You are something else, girl!  :)

Your admirer!

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

 


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