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Author Topic: Facebook groups?  (Read 6964 times)

Puppylove

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Facebook groups?
« on: January 06, 2011, 11:54:20 pm »
Is anyone a member of any facebook groups relating to AN's?  I've seen a handful, and I was curious if any of them are good. I'm not sure I want to join one, but I'm thinking about it.  Is anyone a member of the Acoustic Neuroma / Vestibular Schwannoma Group with over 1,000 members?  It seems to be private, so I can't really tell how active it is.

Thanks!
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Diagnosed with AN on left side 11/5/10. The              
approximate dimensions are 14 mm AP x 18 mm TR x 15 mm CC.
Retrosig surgery w/ Dr. Friedman/Dr. Schwartz at HEI on 1/12/11. Entire tumor removed with no facial weakness.
BAHA surgery 3/29/11

yardtick

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Re: Facebook groups?
« Reply #1 on: January 07, 2011, 12:05:51 am »
I am a part of that group and there are a few other forum members as well.

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

tenai98

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Re: Facebook groups?
« Reply #2 on: January 07, 2011, 07:53:43 am »
Same here. Alot of us are 'friends' on f/b.  I find that is great as I dont frequent the ANA site often but do keep in touch with others on f/b
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

Cheryl R

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Re: Facebook groups?
« Reply #3 on: January 07, 2011, 09:01:31 am »
I am on both Facebooks AN sites but actually don't look at them very often.   Several of us are on regular FB and enjoy those who post.    I have a feeling there are some who are not here but are regulars on the AN ones.            Probably depends on how much time one has to be on them.                               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

moe

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Re: Facebook groups?
« Reply #4 on: January 07, 2011, 09:18:08 am »
I am on the the personal FB site but not the other one. Most of my corresponding on FB is actually AN friends! Join the fun on the personal FB-would love to hear from you!
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Kaybo

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Re: Facebook groups?
« Reply #5 on: January 07, 2011, 10:16:14 am »
I think I may be part of that but NEVER hear from it or go on it.  Just friends with a lot of my AN buddies from here!

K   ;D
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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!

luvzmutt

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Re: Facebook groups?
« Reply #6 on: January 07, 2011, 11:33:19 am »
I'm on some of the facebook groups too, but don't have a lot of AN f/b friends.  If anyone wants to add me as a f/b friend send me a private message.
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Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

pjb

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Re: Facebook groups?
« Reply #7 on: January 07, 2011, 03:37:51 pm »
I too am on FB AN but do not go on it as often as I would like I did fine some very nice people on it that we still keep in touch....

Best Wishes,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

luvzmutt

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Re: Facebook groups?
« Reply #8 on: January 07, 2011, 04:51:34 pm »
If anyone wants to add me on facebook, my name is Leslie Schleider Hyman.
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Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

G_Man

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Re: Facebook groups?
« Reply #9 on: January 08, 2011, 06:44:44 pm »
I did search on Facebook and found AN groups.  I made a decision to keep this aspect of my life off Facebook for now.  Although I wouldn't call my status a "secret", I kind of feel that I don't need to post my AN status there.  A lot of my Facebook friends are from the distant past and we really have very little contact.  I just didn't want to advertise to the world.  Plus I'm not really happy with the lack of privacy on Facebook.  I wouldn't be too thrilled if someone could put my name and acoustic Neuroma in a google search and get hits.  I've been in IT for over 20 years and I understand how all the data mining works, etc.  I don't want the AN status to impact me negatively any more than necessary.  Does anyone else feel similarly?
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Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Kaybo

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Re: Facebook groups?
« Reply #10 on: January 09, 2011, 07:42:11 am »
How funny...I NEVER even thought about that.  I am on FB to be in touch with many, many friends - some even from elementary school.  I certainly don't see my AN as "owning me" - that is a part of me, but CERTAINLY doesn't define me.  I rarely EVER post about my AN (maybe once about being SSD & even that was a funny observation that i would have put whether I had any AN "friends" or not).  I feel like I know certain things about my FB friends from here, better/different, and I know that they probably know me better (I'm even more blond and goofy) and I put lots of pictures of funny things or my kids.  I have a blog (that I haven't kept up very well) so my life is an open book.  I know that some people would disagree with me doing that and that is OK.  I have my FB all "private" but I am not naive enough to think people can't get around that.  HOWEVER, I also know that if someone wants to find out about you, they can find out anything that they want, whether you are on FB or not OR whether YOU have a computer or not!! :o

K   ;D
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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!

Cheryl R

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Re: Facebook groups?
« Reply #11 on: January 09, 2011, 07:52:26 am »
The regular just plain Facebook doesn't mentions ANs unless you write about it.        The AN groups are a whole separate type and one must join that too so the friends on regular FB won't know you are on a AN one unless you mention that on your profile.     I am a member of all of them and it does not show on my profile.      So you can be on a regular one and AN one and the non AN friends will not know unless they look specifically which is doubtful.        Does this make sense?      I am going by looking at my profile and seeing no mention of the AN ones.                            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

CHD63

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  • Life is good again!!
Re: Facebook groups?
« Reply #12 on: January 09, 2011, 01:32:52 pm »
I have been on Facebook for a long time but have consciously chosen to keep it as private as possible.  I use it primarily for family, some close school friends, and my church family.  I have never explored the AN groups on it.  This Forum is so vast with many posters/friends that I see no need to open myself up to being more exposed on Facebook.

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

Jim Scott

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Re: Facebook groups?
« Reply #13 on: January 09, 2011, 02:56:15 pm »
I'm not on Facebook based on (a) privacy concerns and, (b) lack of time to devote to another internet website.  However, my wife is 'on' Facebook and enjoys it. (PM me for her Facebook moniker)  She has urged me to sign up - but I've resisted and will continue to do so until or unless I can find more time to devote to the internet, which isn't likely.  However, even if I registered on Facebook, I doubt that I would mention my AN experience.  Not because I wish to keep it a 'secret' but because it was almost five years ago and doesn't really have much bearing on my life, today.  Besides that, I can discuss ANs right here with folks that I may be able to help in some way, as opposed to just relating a personal medical experience that most people don't really understand and so, haven't a lot of interest in reading about.  Here, it's more like 'family' and my AN experience has some meaning to others that I might venture to counsel.  Realistically, I probably won't be an active member of the ANA website forums indefinitely.  If and when I give up my seat on the ANA Moderators Lear jet (not in my immediate plans) then I might consider becoming a Facebook member.....maybe.

Jim
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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.

G_Man

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Re: Facebook groups?
« Reply #14 on: January 10, 2011, 07:00:17 am »
The issue isn't just what other Facebook users can see.  Facebook sells your information to companies that data mine the internet.  They make money by identifying you and everything about you.  Once you put something on Facebook it's there forever, whether you delete it or not.  Sounds like I've got a case of paranoia, I know.  This forum is a little less accessible to the monsters.
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Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.
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