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Author Topic: facebook  (Read 8624 times)

Cheryl R

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facebook
« on: February 11, 2010, 11:22:05 am »
Is there an AN group on Facebook or is just the various forumites who are there.     I am but don't comment much. I think it has been mentioned before but can't find it.            Just wondering.
                                                      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

tenai98

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Re: facebook
« Reply #1 on: February 11, 2010, 11:26:59 am »
there is an AN group..but I think alot of us just add friends from here.
JO
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

opp2

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Re: facebook
« Reply #2 on: February 11, 2010, 08:16:26 pm »
Just search vestibular schwannoma. There are three groups. I went there a lot in the beginning, but rarely now. Joe Bloggs is a mod on one of the three.
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Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

giantmonster

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Re: facebook
« Reply #3 on: February 15, 2010, 04:16:10 am »
There is one... saw it recently...
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yardtick

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Re: facebook
« Reply #4 on: February 17, 2010, 08:47:02 pm »
I'm on there Cheryl and there is a group with over 800 members.

Anne Marie
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Denise S

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Re: facebook
« Reply #5 on: February 17, 2010, 08:54:18 pm »
Cheryl, I'm on there too and before you could just search Acoustic Neuroma or the Vestibular Schwannoma.   BUT, since FB has changed, I can't seem to search very well.
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W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

sgerrard

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Re: facebook
« Reply #6 on: February 18, 2010, 10:05:44 am »
Here is a link to one of the groups on Facebook:

http://www.facebook.com/group.php?gid=8190517727

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.

Denise S

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Re: facebook
« Reply #7 on: February 18, 2010, 10:23:03 am »
Logged
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Cheryl R

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Re: facebook
« Reply #8 on: February 18, 2010, 10:46:38 am »
Thanks, Steve.     I am on there now.                 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

ppearl214

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Re: facebook
« Reply #9 on: February 18, 2010, 03:47:56 pm »
No longer on FB... my profile/acct was hacked... then rehacked.. then rehacked again. I gave up. If you all talk about me out there, pls be kind. I'm a tender soul.  ;D

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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

lori67

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Re: facebook
« Reply #10 on: February 18, 2010, 04:10:53 pm »
Oh, Phyl.....would we ever talk about you behind your back?   :-X  Nah, we'll just say it right to ya!

Lori
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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.

ppearl214

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Re: facebook
« Reply #11 on: February 18, 2010, 04:12:28 pm »
Quote from: lori67 on February 18, 2010, 04:10:53 pm
Oh, Phyl.....would we ever talk about you behind your back?   :-X  Nah, we'll just say it right to ya!

Lori

Oh, I am SO gonna play frisbee toss to the dog with your halo! ;) :)
xo
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

lawmama

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Re: facebook
« Reply #12 on: February 18, 2010, 04:14:39 pm »
I'm on facebook.  I'm in the AN group and I should be easy to find because I have the same picture I do here.  :-)
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9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

leapyrtwins

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Re: facebook
« Reply #13 on: February 18, 2010, 06:03:26 pm »
I'm not on Facebook - although Lori and Kay are; there always has to be one "odd" one in the "family" LOL

I am on the Cochlear Community (frequently) and the BUSK site (on occasion).  They're both great places for those thinking about a BAHA; and for those who have them.

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

Kaybo

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Re: facebook
« Reply #14 on: February 19, 2010, 07:45:34 pm »
Phyl-
I wondered why I was getting all those weird invited from you!
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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!
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