Author Topic: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group  (Read 6781 times)

pimento

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I have been copying and pasting the ANAUSA local support meetings in our group, so I thought I would let you guys know that we exist! We are a Global based Facebook group, which means we get to meet patients and families from all over the world. Right now we are at about 1,080 members and growing! If you are having trouble finding us, be sure you are searching in Global groups.

Come check us out :) Not sure if the link below works, but give it a try.

http://www.facebook.com/groups/8190517727/

Cheers,

Kelly
Acoustic Neuroma discovered October 11, 2003
Acoustic Neuroma removed via surgery October 14, 2003
Size of AN : 5+
Slight facial palsy
No headaches
No Problem!

PamJ

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Re: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group
« Reply #1 on: August 18, 2012, 09:19:26 am »
Hi Kelly yes your link does work I'm in England and just tried it
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

pimento

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Re: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group
« Reply #2 on: August 19, 2012, 11:25:30 am »
Excellent! thanks for checking, Pam.

Also take note everyone that I it is an 'invite only' group for the sole fact that I got bombarded by spambots joining. I hope that noone feels offended by it.

thanks again and welcome to those who have already joined!

Kelly
Acoustic Neuroma discovered October 11, 2003
Acoustic Neuroma removed via surgery October 14, 2003
Size of AN : 5+
Slight facial palsy
No headaches
No Problem!

PamJ

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  • Posts: 174
Re: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group
« Reply #3 on: August 19, 2012, 01:22:41 pm »
Doess it mean if we talk on facebook all out friends can read it
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

JWW

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  • Posts: 80
Re: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group
« Reply #4 on: August 19, 2012, 05:24:54 pm »
Good question PamJ, I don't want everyone on my Facebook page to be reading what I am saying on this new group webpage!

I have already received a spam message from this new website.  ??? Somebody by the name of Abraham Crawford wrote: "Dear June, your profile captivate my attention. I will like both of us to no each other."

Can you say BARF!!! Might have to leave this wonderful new group.

JW

pimento

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Re: Facebook Group - Acoustic Neuroma / Vestibular Schwannoma Group
« Reply #5 on: August 24, 2012, 06:22:45 pm »
It all depends how you set your privacy settings. I have mine set pretty high so most people cannot see my profile at all. But do know that it is Facebook after all, and you may not want to have all of your information out there. It is a matter of preference.

I do pay close attention to the goings on in the group and I urge all of the members to notify me if they see any behaviors that seem inappropriate.

I can assure you that this Abraham Crawford is not a member of the group, you were hit by a random fake account unfortunately.

I understand that Facebook is not everyone's cup of tea, but we are over 1,080 strong and we would love the group to grow even larger. I will not take offense if you decide it is not for you.

Cheers!
Kelly
Acoustic Neuroma discovered October 11, 2003
Acoustic Neuroma removed via surgery October 14, 2003
Size of AN : 5+
Slight facial palsy
No headaches
No Problem!