Author Topic: AN Book ...  (Read 22704 times)

Debbi

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Re: AN Book ...
« Reply #60 on: June 25, 2008, 08:15:35 am »
Good idea, Jan - and I also think we need MaryBKAriz since she has such an amazing CK story.  And how about our own Jim Scott to write about debulking and FSR?  Do we have a GK story?

I'll PM Jim and Mary and see if I can get them over here...

Debbi, fingers poised on the keyboard...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

msuscottie

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Re: AN Book ...
« Reply #61 on: June 25, 2008, 08:19:04 am »
I have some GK included in mine. 2 surgeries + GK, but it might also be good to get a view from someone who only had GK. After 2 surgeries, I kind of view GK as a cakewalk, which I know it's not, so my view might be skewed.

jerseygirl

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Re: AN Book ...
« Reply #62 on: June 25, 2008, 08:22:54 am »
Scott,

I can write about my two experiences in 1988 (suboccipital) and 2007 (endoscopic retrosigmoid) but the first one was so horrendous I wonder how much help it can really be for any newbie because nobody does things this way anymore (thank GOD). It is too easy to get wrapped up in all my suffering after the first surgery. In a way, it is really encouraging because recovery does happen (even if it takes a long time), technology moves forward and it becomes possible to have a "good" (contradiction in terms?) follow-up surgery.

          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

msuscottie

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Re: AN Book ...
« Reply #63 on: June 25, 2008, 08:36:19 am »
I think it's important to talk about both good and bad experiences. The important thing is that they are realistic experiences. I had the same kind of deal. My first surgery and recovery wasn't good. Then my second one was more textbook and my GK was a piece of cake, so I plan on discussing the highs and lows. You're in   ;)

leapyrtwins

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Re: AN Book ...
« Reply #64 on: June 25, 2008, 10:50:03 am »
Debbi -

Jim and MaryBK, both very good ideas! 

BTW, nice picture  ;)

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

msuscottie

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Re: AN Book ...
« Reply #65 on: June 25, 2008, 11:02:17 am »
I just sent you guys (& ladies) an email   ;D

FlyersFan68

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Re: AN Book ...
« Reply #66 on: June 25, 2008, 11:04:28 am »
I will be sure to purchase a copy or two. Really hope it happens.

Jim Scott

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Re: AN Book ...
« Reply #67 on: June 25, 2008, 12:12:05 pm »
Hi, Scott and friends: 

I had neglected this thread for awhile because it had become relatively dormant but I see it's come back to life.  Good.

I received a PM from Debbi today (thanks, Debbi) nudging me to write a chapter for the AN book.  Of course I'm willing to contribute my experience, which included a cancer scare (false alarm) as well as successful retrosigmoid debulking surgery and FSR.  I had an excellent surgeon and a fairly rapid and complete recovery so mine would be a positive story.  I need to know how many words are required and where to send my chapter, when completed.  I assume and accept the fact that this will be a volunteer work (no money), which is O.K.  :)

Jim
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.

msuscottie

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Re: AN Book ...
« Reply #68 on: June 25, 2008, 01:07:02 pm »
Great Jim ... if you want to send me your email address via private message, I'll make sure you're included on the emails with further details.

leapyrtwins

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Re: AN Book ...
« Reply #69 on: June 25, 2008, 05:12:19 pm »
Kaybo and Nancyann would also have great stories and would make nice additions to the book.

I know Kaybo is out of town until tomorrow; maybe she'll respond then.

Got your email, and I'm "in"

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

Debbi

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Re: AN Book ...
« Reply #70 on: June 25, 2008, 05:28:14 pm »
Me, too, Scottie. 

Debbi - fingers poised
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: AN Book ...
« Reply #71 on: June 27, 2008, 12:28:04 pm »
I would be happy to write about my recent CK that ended up being one instead of three days, very unusual turn of events!

If interersted, I would like to contribute.

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

msuscottie

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Re: AN Book ...
« Reply #72 on: June 27, 2008, 12:54:18 pm »
Great, just PM me your email address

msuscottie

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Re: AN Book ...
« Reply #73 on: July 30, 2008, 02:20:22 pm »
Thanks to those of you participating. We've already got two or three stories in!

Dana

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Re: AN Book ...
« Reply #74 on: July 30, 2008, 06:07:01 pm »
Scott,
I had GK last summer, and would be willing to write up my story.  Pretty short, and pretty sweet compared to others.  I would also probably include, if appropriate, my decision-making process which includes my experience wih both my mother and my first husband's brain surgeries.  It's a fine line, since I don't want to scare people away from microsurgery, but it was definitely a big factor for me.  So..however it might fit in appropriately.  If you've got standalone GK experiences committed to write-up already, I have no big need to write up my story, though!

I also stand by my offer from last year of serving as a proofreader.  I'm pretty good at spotting things.

I'll send you my email address.
Ciao,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.