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Author Topic: post CK 8 month update  (Read 2014 times)

jak1

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post CK 8 month update
« on: January 26, 2012, 08:13:02 pm »
Hello all.. my original post is here

http://www.anausa.org/smf/index.php?topic=15344.msg979727408

I had less issues for months and a 6 month MRI showing the tumor starting to die and not really growing.  Then over the weekend out of the blue, my skull turned numb, hearing went in and out on my affected ear, terrible headaches, ear ringing non stop and the all time worse fatigue I have ever experienced... now, I am on steroids.. I am wired with no chance to sleep and my stomach is killing.. ugggg.. my doctor says the toughest window is most likely 6-18 months post CK.. fingers crosses.. will see how it goes..

regards,

-JAK
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2.7cm AN diagnosed 4/11.  Stanford CK 5/11.

Jim Scott

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Re: post CK 8 month update
« Reply #1 on: January 27, 2012, 04:45:27 pm »
Hi, JAK ~

I'm sorry to learn of this flare-up of AN symptoms after your 6-month MRI looked so good.  I hope the steroids do the trick and these symptoms subside, quickly.  Please keep us updated, as you're able.  Thanks.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Richard_T

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Re: post CK 8 month update
« Reply #2 on: February 02, 2012, 02:11:54 pm »
I am sorry to hear about your flare-ups.  In addition to feeling for you (genuinely :)), I have a vested and selfish interest in your issue.  I am just two (2) weeks post CK from Stanford (Drs. Chang and Gibbs) and (BTW - born and raised in NYC through college) and, while my symptoms are pretty minor, your situation brings me a dose of reality. I hope that the steroids relieve your symptoms quickly and that you can get some much needed sleep soon!

Please keep us posted.

Richard
« Last Edit: February 02, 2012, 02:49:55 pm by Richard_T »
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1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

jak1

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Re: post CK 8 month update
« Reply #3 on: February 02, 2012, 07:06:19 pm »
Dr. Chang is amazing.. He has been corresponding with me and monitoring my situation.. but, I am having areal tough time with steroids and all the symptons.. .
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2.7cm AN diagnosed 4/11.  Stanford CK 5/11.
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