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Author Topic: If you are on Facebook..............  (Read 25862 times)

Kaybo

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Re: If you are on Facebook..............
« Reply #30 on: August 06, 2009, 12:49:56 pm »
Capt'n Deb~
I couldn't get it either and & I even went back the 2nd time & pasted exactly what you put... ??? ???

K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Captain Deb

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Re: If you are on Facebook..............
« Reply #31 on: August 06, 2009, 04:40:30 pm »
I actually searched myself on facebook and I didn't come up! What's up with that?

Capt Deb
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"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

saralynn143

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Re: If you are on Facebook..............
« Reply #32 on: August 06, 2009, 04:57:14 pm »
Maybe there is a delay before your profile goes up?

Maybe you accidentally misspelled your own name??

Maybe *gasp* Captain Deb was REJECTED by Facebook???

The mystery deepens . . . stay tuned.
Logged
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

lholl36233

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Re: If you are on Facebook..............
« Reply #33 on: August 06, 2009, 05:39:10 pm »
Laura Jean Holland
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Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

sgerrard

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Re: If you are on Facebook..............
« Reply #34 on: August 06, 2009, 07:04:17 pm »
I found "Deborah Jacobs Purves" right away on Facebook. I wonder if I can be her friend.  ::)

I am in as Steve Gerrard, of which there are several. Look for a guy in a blue hat. I'm not the soccer player they all love or hate, I am on page 8 or so.

Steve
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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.

Dana

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Re: If you are on Facebook..............
« Reply #35 on: August 06, 2009, 07:22:44 pm »
I'm Dana Dietz   at   http://www.facebook.com/dana.dietz

Wonder if there's any reason we should create an Acoustic Neuroma group on Facebook? 

Actually, one reason would be to perhaps reach more newly diagnosed in-a-tizzy-as-we-all-were folks?

Whatcha think?

I mean, we don't need it for communication....

Love,
Dana
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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.

Kaybo

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Re: If you are on Facebook..............
« Reply #36 on: August 06, 2009, 07:34:31 pm »
Dana~
I think there is an AN group but not "our" group!

K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Dana

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Re: If you are on Facebook..............
« Reply #37 on: August 06, 2009, 07:35:58 pm »
Yeah, I just searched "acoustic neuroma" on facebook and there are several groups... actually two of them are associated with ANA.  Dana
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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.

nteeman

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Re: If you are on Facebook..............
« Reply #38 on: August 06, 2009, 07:48:31 pm »
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Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

sgerrard

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Re: If you are on Facebook..............
« Reply #39 on: August 06, 2009, 07:57:26 pm »
I think the ones that sound like they are with the ANA are not officially with the ANA, but have a link to the web site.

There has been mention of some interest in Facebook at HQ, so maybe there will be an official one some day. I would like to see an ANA Forum group. :)

Steve
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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.

Kaybo

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Re: If you are on Facebook..............
« Reply #40 on: August 06, 2009, 09:04:30 pm »
That's what I was thinking, steve...

K
Logged
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Joef

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Re: If you are on Facebook..............
« Reply #41 on: August 07, 2009, 06:08:16 am »
I found Capt now... must of been a delay it getting the search updated....hmmmm.....
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4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

EJTampa

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Re: If you are on Facebook..............
« Reply #42 on: August 09, 2009, 06:03:36 pm »
I am there at http://www.facebook.com/EJTampa
 
To make a URL specifically for your page, go here http://www.facebook.com/username/ and set one up.  You can never change it, so choose wisely! :).
 
I know I've been away for a while, but have been back lurking a few times lately. :)
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Kaybo

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Re: If you are on Facebook..............
« Reply #43 on: August 09, 2009, 06:22:09 pm »
ERNIE! 
I was going to send yu a message to see what was up but I couldn't remember your screen name - there is someone new on here that just goes by Ernie and i think of you every time!!  How are you?

K
Logged
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sgerrard

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Re: If you are on Facebook..............
« Reply #44 on: August 09, 2009, 06:29:04 pm »
Quote from: EJTampa on August 09, 2009, 06:03:36 pm
I know I've been away for a while, but have been back lurking a few times lately. :)

Don't mistakenly think that your absence went unnoticed, Mr. Tampa.  ::)

Steve
Logged
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.
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