Author Topic: I Have Failed CyberKnife...Now What?  (Read 15550 times)

leapyrtwins

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Re: I Have Failed CyberKnife...Now What?
« Reply #15 on: July 21, 2008, 10:24:12 pm »
Kathleen -

from my many days on the forum, I've found that this whole support thing is very circular.  We support you, you go on to support others, and like that shampoo commercial used to say "and so on and so forth" (or was it "and so on and so on"?).  Oh well, you know what I mean.  It just keeps going around and around  :D

It's a fabulous place, isn't it?

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

Kathleen5306

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Re: I Have Failed CyberKnife...Now What?
« Reply #16 on: July 22, 2008, 03:45:14 am »
Jan

I know what you mean.  It just keeps going around and around in a wonderful way.  Hey, I want to post a photo of me to feel even more connected with this group and the group with me.  How do I do it?

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

Nancy Drew

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Re: I Have Failed CyberKnife...Now What?
« Reply #17 on: July 22, 2008, 10:51:56 am »
Same here as far as the photo.  Jim is good with these questions.  Kathleen, I am from your neck of the woods, and we have sent PM.  Hope you had a nice vacation.  Please keep in touch.  Nancy (from Centennial)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

leapyrtwins

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Re: I Have Failed CyberKnife...Now What?
« Reply #18 on: July 22, 2008, 07:24:52 pm »
Posting a photo for your profile is a little different than posting a photo in general (within a post) - personally I think profile photos are a little trickier.

I searched the forum and here is a link that explains how to post a profile photo  http://anausa.org/forum/index.php?topic=6426.msg62036#msg62036

I personally use photobucket (it's free and easy to use).

If you need instructions on how to post a photo in a post, let me know and I'll PM you the instructions.

Good luck,

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

ColoradoGal

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Re: I Have Failed CyberKnife...Now What?
« Reply #19 on: July 22, 2008, 08:31:23 pm »
Kathleen,

I just sent you a PM, but then I read this thread, and my heart just goes out to you - what with your experience with CK and now facing surgery. From what I've read, it sounds like you can't go wrong with your decision to go to HEI.   We are all pulling for you!!!

Also thanks, Jan, for the photo instructions.  Some day when I get a minute, maybe I will try to post one.  I haven't even figured out yet how to add that cool signature at the bottom that you all have! 
« Last Edit: August 09, 2008, 02:16:48 pm by ColoradoGal »
2.5cm x 2.8cm debulked Aug 2008 at Barrows
retrosig, Spetzler & Weisskopf
post-op SSD, but all the facial stuff is working!

Kathleen5306

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Re: I Have Failed CyberKnife...Now What?
« Reply #20 on: July 22, 2008, 09:42:59 pm »
I know that I love using my SSD excuse with my husband....Oh, sorry, I didn't hear you ask me to do that!  There are advantages.  I always look for the silver lining.

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

leapyrtwins

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Re: I Have Failed CyberKnife...Now What?
« Reply #21 on: July 22, 2008, 10:26:49 pm »
I haven't even figured out yet how to add that cool signature at the bottom that you all have! 

Colorado -

that's an easy one.

Click on the "Profile" button.  On the left side of the screen go to "Modify Profile" and select "Forum Profile Information".  Go down to the "Signature" area and type in your information, then click on "Change Profile".

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

ColoradoGal

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Re: I Have Failed CyberKnife...Now What?
« Reply #22 on: July 23, 2008, 10:53:36 am »
Thanks, Jan.  That was easy!
2.5cm x 2.8cm debulked Aug 2008 at Barrows
retrosig, Spetzler & Weisskopf
post-op SSD, but all the facial stuff is working!

leapyrtwins

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Re: I Have Failed CyberKnife...Now What?
« Reply #23 on: July 23, 2008, 01:11:47 pm »
Yea!

Hope you try the profile photo next.  It's always nice to put a face with a name  :)

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

ppearl214

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Re: I Have Failed CyberKnife...Now What?
« Reply #24 on: July 23, 2008, 01:36:30 pm »
Kathleen, when this was initially posted here, I was on a moderating/site hiatus... checking in from time to time.  I've been trying to play catch up with all that is going on and things I may have missed.  I saw a post or 2 from you in my quick perusing of the site... and since then, honestly, have been at a loss for words. I truly am at a loss at what to say. Many of us (yourself included, I'm sure) have very high hopes in our treatment selections... including CK.  Many of us that have had CK (a while back to very recently) have endured (or not) issues post treatment. I know of you to be the 2nd person on this site that is was not what was hoped.

In preparing for your surgery at HEI (and we know that they rank as one of the best around for AN surgical treatments), I want to extend my wellness wishes to you.  I know you are in fab hands there (not sure who on their team is doing the surgery or I may have missed it noted in another thread somewhere....).  Will be sending the wellness wishes and my dog's (Beanie the Pug) infamous "healing toots"... (many around here that have been on the forums for a while know... her "toots" heal all that ails since they distract you from what ails you!)...... :)

Thank you for sharing this with us.  I cannot answer your questions as I hoped (I don't know of anyone re-CK'd but like you, know it can be redone...).  My wellness wishes come to you from me... let's get this resolved!

Healing huggles.. and yes, a pic would be great! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ChipsFL

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Re: I Have Failed CyberKnife...Now What?
« Reply #25 on: October 12, 2008, 11:30:30 am »
 

Kathleen

Hello Kathleen,
      So you had CK back in 2002 and no follow up MRI's until 2008 ? 
 
4-2012,  CK, Wellington, Fl
11-2012, Followup MRI- "no Sig. change"
10-2015 Followup MRI- Tumer Shrunk In Size

 


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