Author Topic: AN Book ...  (Read 21568 times)

leapyrtwins

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Re: AN Book ...
« Reply #30 on: April 24, 2008, 11:02:28 pm »
Thanks Jan!! You are a ture friend...I'm beginning to wonder about that other AN girl...I think she is jealous that we are moving in on the garage business!! 
 ;D     ;D      ;D     ;D     ;D

K

You know, I got the same impression - but I'm thinking there will be enough business to go around. LOL

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

Pooter

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Re: AN Book ...
« Reply #31 on: April 24, 2008, 11:30:00 pm »
Title idea:

"The Acoustic Neuroma Journey - The journey from diagnosis to recovery through the eyes (and ears) of those who have been there"

I might be interested in contributing a chapter as well if wanted.  I have my surgery in 2 weeks (*gasp*).. We'll see how helpful that "story" would be to anyone.

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Syl

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Re: AN Book ...
« Reply #32 on: April 24, 2008, 11:54:08 pm »
Title idea, but you'd have to get on the Oprah Show first.

"It took a brain tumor to get me on Oprah"

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

lori67

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Re: AN Book ...
« Reply #33 on: April 25, 2008, 08:28:07 am »
Brian and Syl - those are both great titles too! 

Oh, K - I was just kidding!  I can't hit you over the head since I read the thread where you'll be doing the babysitting!  I'll put the kids on a plane to your house this afternoon.  2 more little girls - you'll hardly notice them.  I'll even dye their hair blonde so they'll fit in with your girls!   ;)

And Brian, I hope you have a very boring and uneventful chapter to add to the book! 

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

kate

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Re: AN Book ...
« Reply #34 on: June 19, 2008, 11:57:32 pm »
Hi,

I have not been on the ANA forum for quite a few months and just noticed this thread for the first time. Count me in. I read through all the posts quickly but didn't note exactly what chapters are already "spoken for".  I am 8 yrs. post surgery. I am also a professional in the counseling field: a licensed marriage and family therapist. So I could do a chapter on coping emotionally with all aspects, from initial diagnosis to coping with after effects, making treatment decisions along the way. It could be somethlng like a chapter by a professional in dealing with life's difficult stressful transitions, who also personally is on this particular journey. Let me know if you are interested

Kate
Surgery 5-1-2000,  3.9cm, Huntington Memorial Hospital, Pasadena, California. 
Gold weight first couple of years.
Palbebral eyelid spring 2004 by Dr. Robert Levine "saved my life."
 I  have been enjoying life a lot, even with a crooked face and one sided hearing.

Sue

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Re: AN Book ...
« Reply #35 on: June 20, 2008, 12:43:48 am »
Hi Scotty,

I'm glad you are still working on this project.  Maybe something will come of this one day soon!   I wish I could come up with a clever title for you - but right now I "got nothin'". 

Maybe something will occur to me, and if I write it down real quick, maybe I'll remember to tell it to you later!  ;D

Sue in Vancouver


Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

msuscottie

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Re: AN Book ...
« Reply #36 on: June 20, 2008, 11:23:43 am »
It's still something I'd love to do, it's just been rough to get off the ground.

Debbi

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Re: AN Book ...
« Reply #37 on: June 22, 2008, 11:56:58 am »
HI Scott-

I was just thinking about this yesterday and wondering if it is still and idea. 

Wondering if a first step might be to gauge ANAs interesting in providing this as one of their resources - either as a for-fee book, or as a download?  Maybe one of our wonderful Global Moderators could help with this in terms of talking to powers that be at ANA?

Then, seems that the next logical step would be getting interested authors to submit a chapter outline - this would be less than a page from each author with topic and general outline.  That gives us an opportunity to see what we've got in the way of overall content.

I would be happy to volunteer to helpl you with this. I don't have ANY publishing experience, but do have a little bit of writing experience.  I'm thinking LADavid and Jim Scott may also be able to lend some expertise?

I love this whole idea and hope we can get it off the ground!

Debbi - as always, with lots to say...
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 #38 on: June 23, 2008, 08:58:46 am »
I'm still ready, willing and able ... I think it's been a matter of people wanting to participate, but then not finding the time to sit down and write a chapter, so if we can find a crew of writers committed to writing, then I think we could make it happen.

Soundy

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Re: AN Book ...
« Reply #39 on: June 23, 2008, 10:14:03 am »
I will buy the first copy ...

I read through this the other day and was trying to think what I could write and can't think of a thing
to write ... or more accurately can think of too many and couldn't write a cohesive paragraph about one
subject...

The wait ...dealing with family that just wanted it ripped out while I was content to wait til Bennie began
to grow at an alarming rate... the SSD ... the never ending ringing in my ears that at time brings me to tears
because it can no longer masked by sound since I have no hearing in that ear... the loss of my ability to sub
at school because I could not guarantee that at some point in the day I would not have to lay down or leave...

the frustration of not being able to fully participate in the farm work... farms don't have smooth paved walkways
and working the cows is now a real danger as I stumble about ... I am no longer a fully functioning part of our life ...
I feel left out when husband and the girls go on the fence rounds that are a weekly ritual of walking the fences
looking for breaks and along the way looking for deer , feathers ,mushrooms ,flowers ect... less about the fences and
more about life ... and I am no linger a part of it because I can not manage walking up and down the hills over
limbs ,rocks and other obstacles  ... they bring me back rocks,flowers and sometimes take my camera so I can take
a virtual walk with them... stick them on the computer and make a slide show that they narrate for me ... my
husband says don't worry ... they can handle it without me ... tells me rest or read or whatever... down time from
the kids ... the thing is I don't want them to handle it without me ... I am still here and get angry sometimes at the
changes in my day to day life...he still goes to work every morning and comes home to the farm to work some more
and says to not worry he has things covered... just sucks sometimes...

And for some reason I keep thinking about the gnome I saw at the end of my bed when I was coming out of
anethesia... turned out to be a nun but I still see her as a gnome ... I doubt many have had a gnome come  visit them  :)
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

msuscottie

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Re: AN Book ...
« Reply #40 on: June 23, 2008, 10:30:03 am »
I always tell people that I saw death, and it looks like a tiny Fillipino man ... because when I was in recovery, I opened my eyes for a second and there was a chaplain (who was filipino) standing over me reciting "as I walk through the valley of the shadow of death ..." It was at that point that something in my head clicked and I thought, "son of a bit%h! I died"

Soundy

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Re: AN Book ...
« Reply #41 on: June 23, 2008, 12:26:20 pm »
When I came around and saw the little gnome/nun I kinda thought the same thing except my
surgeon and anesthesiologist were with me too and didn't figure we had all croaked

te little nun was about 4 feet nothing , beutiful little black woman with full cheeks that reminded me
of the shell of a buckeye

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

cindyj

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Re: AN Book ...
« Reply #42 on: June 23, 2008, 02:02:34 pm »
Hadn't seen this thread before today - think it's a great idea, especially to somehow associate it w/ ANA, if they're willing.  As one who is barely more than a newbie here, I know it would have been something I definitely would have been interested in - still would be interested in it!  We have such a great wealth of information and experience here, not to mention some super writers (thinking of Jim Scott as well as many others).  My journey/story is not complete (as I can't make up my mind) and it may be on the dull side, but I'd help in any other way I could.

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

leapyrtwins

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Re: AN Book ...
« Reply #43 on: June 23, 2008, 02:27:43 pm »
I always tell people that I saw death, and it looks like a tiny Fillipino man ... because when I was in recovery, I opened my eyes for a second and there was a chaplain (who was filipino) standing over me reciting "as I walk through the valley of the shadow of death ..." It was at that point that something in my head clicked and I thought, "son of a bit%h! I died"

Scottie -

that is SO funny!  You've got to put that in the book  ;D

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

lori67

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Re: AN Book ...
« Reply #44 on: June 23, 2008, 04:31:02 pm »
Yes, I think the gnome nun and the Filipino chaplain definitely deserve a mention!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.