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Author Topic: If you are on Facebook..............  (Read 27094 times)

EJTampa

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Re: If you are on Facebook..............
« Reply #45 on: August 09, 2009, 06:32:14 pm »
I'm doing good!  I started getting headaches in the back of my head, starting on my AN side and moving around the other side.  Sneezing makes it much worse.  To be honest, a single Ibuprofen completely gets rid of the pain, so no big deal.  I haven't taken any pain killers in 2 days now, so like I said, pretty minor.
 
How have you been doing?  I've been reading as much as I can, but we entered our busy season at work (which is where I am now) so don't get on as much.  I'll try to post an update soon.
 
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.

clarmst

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Re: If you are on Facebook..............
« Reply #46 on: August 09, 2009, 09:08:23 pm »
Logged
Dx'd left side AN, May 06
Neurotologist - Dr. Bradley Thedinger
CyberKnife treatment - Menorah Hospital - Dr. Hughes - July 06
MRI's indicate growth
Dr. Hughes declares treatment a failure - March 09
Aug., 09 MRI - tumor "stable" with no additional growth!
Aug., 2010 - MRI - tumor is smaller!

EJTampa

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Re: If you are on Facebook..............
« Reply #47 on: August 09, 2009, 09:12:02 pm »
Quote from: sgerrard 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

Good to know I was missed.  Hopefully in a good way ;). 
 
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.

Keri

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Re: If you are on Facebook..............
« Reply #48 on: August 09, 2009, 10:05:12 pm »
well welome back! i was wondering about you too!
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

msuscottie

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Re: If you are on Facebook..............
« Reply #49 on: August 18, 2009, 10:33:26 am »
im late to the game, but im on facebook ... scott ryan
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Brendalu

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Re: If you are on Facebook..............
« Reply #50 on: August 19, 2009, 03:52:42 am »
Scotty,
WOW!!  If your new profile picture is an indication of how you are doing, I would say life is finally really good for you.  You look terrific and you have been missed!  How is that little girl of yours??
Brenda
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Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Migoi

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Re: If you are on Facebook..............
« Reply #51 on: August 19, 2009, 07:27:09 am »
My facebook page is at http://www.facebook.com/migoi . Make sure you tell me you're part of the ANA family. Sometimes those itty bitty pictures make it difficult to see who you are..not to mention that many of us use other names in on various forums.

No secret that I've had my brain strolled through by a bunch of folks, so tell whomever you  want... we've got to explain my behavior somehow.

..take care.. tim b
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Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
http://www.facebook.com/migoi

grega

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Re: If you are on Facebook..............
« Reply #52 on: August 20, 2009, 06:50:44 am »
Hi all ....... www.facebook.com/aka.ga

FB is brand new to me, so I tried something diff, since there are like over 500 Greg Andersons .... I entered me as Anderson Greg.

Is that legal ?????  ??? :o

GA
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1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

EJTampa

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Re: If you are on Facebook..............
« Reply #53 on: August 20, 2009, 08:39:48 am »
Cheri, I would have made the same mistake!  I'm glad you made it first so the rest of us can avoid the same mistake ;)
 
I can't imagine anyone here would hold a grudge.  Facebook is a very public networking forum where nothing is secret, so things like this are bound to happen.  For the record, and for everyone else's benefit, my surgery is no secret and is known by most of my friends and all of my family.  In fact, I just posted about my latest procedure.
 
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.

CHD63

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Re: If you are on Facebook..............
« Reply #54 on: August 22, 2009, 09:21:55 am »
I have had a Facebook page for quite awhile now but my "friends" are actually mostly family members.  There is a teensy part of me that is not quite ready to let pictures of my grandchildren be available to others.  As for my AN, I have never felt the need to keep quiet about it ..... in fact I look on it as an opportunity to educate others.  If I were still in the workforce and concerned about possible discrimination about it, maybe I would feel differently .... but I don't think so.

This Forum has been a great source of support so after Cheri's experience, I think I will just stay here.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: If you are on Facebook..............
« Reply #55 on: August 22, 2009, 10:12:13 am »
Quote from: CHD63 on August 22, 2009, 09:21:55 am
There is a teensy part of me that is not quite ready to let pictures of my grandchildren be available to others.  As for my AN, I have never felt the need to keep quiet about it ..... in fact I look on it as an opportunity to educate others. 

Clarice -

I'm with you on both these counts.

My children's pictures aren't available to others on the internet - even this forum - and I don't let them access Facebook or MySpace.  Just not the exposure I want for them.  When they are older, it's their choice; right now it's mine.  I have no issue with others who don't follow my "rule" - this is just what works for me and my family  :)

The whole world knows about my AN - and my BAHA - IMO educating others and sharing with those who are in the same situation as I am (was) are just two of the reasons I'm sure God gifted me with an AN.

Jan
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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

CHD63

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Re: If you are on Facebook..............
« Reply #56 on: August 22, 2009, 02:27:50 pm »
Jan .....

Thanks, that makes me feel better!  BTW, it was so neat to meet you in Chicago and talk with you even if too briefly!

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: If you are on Facebook..............
« Reply #57 on: August 23, 2009, 09:26:33 am »
Clarice -

I regret that I didn't have more time to talk with others at the Symposium - you included.  Those darn sessions kept getting in the way  ;)  :D

I think next time we all have to arrive several days early so we have time to socialize before the sessions.  The sessions I did attend were very valuable - I just didn't attend enough because I was too busy chatting and networking with others.  I'll have to come up with a more balanced approach in Cincinnati.

Jan
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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

Cheryl R

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Re: If you are on Facebook..............
« Reply #58 on: August 23, 2009, 09:39:22 am »
We need our own forum symposium!             It is always hard to see everyone and also to to get much of a group activity away from the forum with everyone.        The idea is  good but just doesn't work out.        I am glad we did our Thurs pm supper but hard to talk there as was noisy and at a long table.        I am glad Lilan told us about it though.       Nice place to eat and place for anyone to find something they like.                      It wsn't quite as good as what Daisy's party would have been.        Aren't we all stuffed today!                                      Cheryl R
           
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

sgerrard

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Re: If you are on Facebook..............
« Reply #59 on: August 23, 2009, 11:18:31 am »
I think we should try and get a forum workshop scheduled at the next symposium. It would a chance for the forumites to gather, and also for other attendees to come see what the forum is about. We might even get a doctor or two to come and see that the Internet is not all bad.

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.
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