Author Topic: Cyberknife info needed for newbies.....  (Read 18330 times)

MaryBKAriz

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Re: Cyberknife info needed for newbies.....
« Reply #60 on: July 25, 2008, 09:11:00 am »
Hi Debbie,

Welcome to the site! I am glad you found us. My doctor also steered me here and I am so grateful for his lead. It has helped me immensely.

The worst part to me was making the decision on what to do. I am so glad you found Stanflor. They of course are terrific from everything I have heard. Please let us know where you live and all about your AN and how you found out you have it. We are a curious group. I agree starting a new topic would be great, that way we can follow you easily. We are cheering you on. I had my Cyberknife in early June so I am a new "Postie."

Take care,

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

DebbieL

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Re: Cyberknife info needed for newbies.....
« Reply #61 on: July 25, 2008, 10:58:17 am »
Hi all,

Wow, you guys are amazing.  So fast to respond and wish me well.  It actually brought tears to my eyes.  Not everyone you talk to about having an AN and dealing with issues they can't see is sometimes very difficult so it's nice to have other An's that understand what you're going through. 

I started my AN journey 2 years ago when I was having terrible ear aches (right side) and headaches.  My physician at Kaiser (Folsom, CA where I live) kept saying there was nothing wrong with my ear and would send me away.  By the fourth time seeing her, I finally said there had to be something because I wasn't imagining this ear problem.  She sent me to an ENT who also said there was nothing wrong but would suggest an MRI if I continued to have problems.  This back and forth continued for months until I asked to have the MRI done.  When they told me it was an AN I was shocked and they the whirlwind began trying to decide what to do.  I chose the wait and watch until now.  My AN started out at 4mm x 6mm x 6mm which is small but I was also having some balance issues.  It is now 9mm x 9mm x 7mm.  My hearing has also declined a small amount but decided to kill it now before anymore hearing goes.  I also have tinnitis (or whatevr it's called) which is very annoying and very loud in the right ear.  It drives me nuts.

At first my doctor at Kaiser suggested I stay in Sacramento and have the GK done.  I checked the doctor out on the website at Kaiser to find out that he specializes in back tumors and had only done a few brain tumors.  He wasn't about to touch my brain!  That's when I started researching and found out that the Redwood City Kaiser had a lot of doctors who did brain tumors and had been doctors at Stanford before joining Kaiser.  My Kaiser doctor, Dr. Efron, was great and suggested I consult with Dr. Adler and Soltys at Stanford to check out the CK.  That was back in 1006 at which time I  decided to wait becasue I wasn't sure what to do and knew that since it was small I had time to research and think about it.  That is when my neurologist suggested I look up and join this site.  It took my a year to actually do that. 

It was after reading all the postings here and reading everyone's experience that helped my make my decision to do the CK.  I am so glad I am able to go to Stanford to have it done.  From all the postings I've read, everyone seems real pleased with the doctors there.  From what I've heard, Kaiser may be in the process of purchaing their own CK machine which was another deciding factor for me.  I wanted to be able to go to Stanford and not have it done at Kaiser with someone who hadn't done the amount that Stanford doctors have done.

The mask making was probably to worst for me.  I'm not real clostrophobic but I don't like things against my face.  I'm also having a problem swallowing sometimes and the mask made that difficult.  I'm sure I'll probably take the happy pill or whatever it is they can give me to help.  SPeaking of swallowing, has anyone had problems with that? It seems that sometimes it's hard to swallow.  I mentioned it to my neurologist who said it could be related and if I continued to have problems to come back.  The other day I had several incidents with not being able to swallow that even scared my 16 year old who was home at the time.  I put a call into my doctor but she's on vacation this week.

Wow, I think I've just written a book for you to read.  I will post again after my CK experience next week.  My sister is flying in from Seattle and we're treating it as a vacation for the two of us so hopefully I'll have a great experience and feel like shopping and having fun.  Thanks again for all your encouraging words.  Having you guys (and gals) has helped me tremendously.

Debbie

DebbieL

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Re: Cyberknife info needed for newbies.....
« Reply #62 on: July 25, 2008, 12:19:12 pm »
Hi Steve,

Thanks for explaining how to start a post.  It definitely will help to know how to get around in the site.  It can be rather overwhelming at first knowing what to read and where to post info to keep everyone informed.  You'll hear a lot more from me once I get started.

MaryBKAriz

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Re: Cyberknife info needed for newbies.....
« Reply #63 on: July 25, 2008, 01:17:48 pm »
Debbie,

Thank you for your post. It is good to "meet "you. I think your chances of feeling good after the CK are quite high. My hubby and I went out to eat right afterwards. I was a little tired - I think mostly from the anticipation of going through it. The symptoms I have now (2 months postie) are the same as pre-ck, just a little bit worse.  I do get more tired, more easily now. I think it is my balance issues worsened and it takes a lot of energy to stay upright. I still have some hearing. On some days it is worse than others. It is never good, but wasn't pre-ck. That is why at the last minute I went only 1 day. My hearing wasn't worth saving. My facial nerve is fine. I have minor twitching occasionally. So really my issues is still dizziness, but without that I doubt I would have been diagnosed in the first place, so there are pluses to everything. I am improving and fully expect to get back most of my balance. I am glad I chose CK and have never second guessed my choice.

Wishing you well!

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

MaryBKAriz

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Re: Cyberknife info needed for newbies.....
« Reply #64 on: July 25, 2008, 01:31:22 pm »
PS

I forgot to mention I had tinnitus before CK and still have it. When I am tired, it gets worse. It gets exceptionally loud at it's worse and I say it is screaming at me. I have gotten so used to the 24/7 high pitched sound that I can truly say the vast majority of the time I forget it is there. This is something I could never have imagined when I first started having my AN symptoms.
 ;D

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

Pascale

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Re: Cyberknife info needed for newbies.....
« Reply #65 on: July 29, 2008, 04:49:24 pm »
hello hello :)

I am falling for CK  ;D

It sounds as t's the best way to go. Now, how long did it take you all to go back to work/work out...after the treatment?? some weeks? months?

ty for all your stories. Since 2007!! amazing :D
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

sgerrard

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Re: Cyberknife info needed for newbies.....
« Reply #66 on: July 29, 2008, 08:08:53 pm »
Pascale,

I had my last treatment on a Friday, flew home on Sunday, and was back at work at 9:00 am Monday morning. I was not 100% for several months, but I was probably 90% right away. The last 10% takes a while to get back.

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: Cyberknife info needed for newbies.....
« Reply #67 on: August 01, 2008, 05:55:51 am »
Hi Pascale.... you will know what is best for you and your situation in making any AN treatment decision. 

I was back at work the week after CK.  A bit fatigued and really no headaches... the fatigue was a bit for me to overcome (but, I have other physical issues as well, so I think it, all tolled, was taxing for me and my situation).  I was doing everything from walking my dog, going shopping, our for meals, working too many hours, etc.... but when the body talked to me and said it wanted rest, I listened.

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

 


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