Author Topic: ANA should make a Chat Room  (Read 6947 times)

mindyandy

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ANA should make a Chat Room
« on: January 13, 2012, 03:49:49 pm »
Just a suggestion  ;D ;D
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Jim Scott

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Re: ANA should make a Chat Room
« Reply #1 on: January 13, 2012, 04:17:19 pm »
Just a suggestion  ;D ;D

Noted.  Thanks for the idea.

Jim
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.

frenchjoey

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Re: ANA should make a Chat Room
« Reply #2 on: January 14, 2012, 02:08:03 am »
Great idea!  :D

ppearl214

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Re: ANA should make a Chat Room
« Reply #3 on: January 14, 2012, 05:44:41 am »
Been discussed in the past with the "powers that be"....... if enough members interested, could re-propose to them again.

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

producer

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Re: ANA should make a Chat Room
« Reply #4 on: January 14, 2012, 06:44:58 am »
Yes, great idea!!



chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

chloes mema

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Re: ANA should make a Chat Room
« Reply #5 on: January 14, 2012, 02:57:47 pm »
Add me to the list!   :D

Good idea.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

leapyrtwins

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Re: ANA should make a Chat Room
« Reply #6 on: January 15, 2012, 10:38:36 am »
For my purposes, the Forum has always been enough.

Also, there are numerous ANA local support groups - and there's always the old-fashioned way to communicate (phone).

Jan
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

mchp82

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Re: ANA should make a Chat Room
« Reply #7 on: February 08, 2012, 09:36:19 pm »
I already am on a few IRC networks, so a chat room for the ANA community would be great in my opinion.

MDemisay

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Re: ANA should make a Chat Room
« Reply #8 on: February 20, 2012, 09:25:20 am »
What would the purpose of a Chat room be? Would it further subdivide us? Or make it impossible for others of us to see what's on someones mind? I was on this board pre2004 remember and the way it was done back then was dump all communication into a giant AOL mailbox, which I had to go through daily!

I urge caution here as I don't want to go that route again.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

mchp82

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Re: ANA should make a Chat Room
« Reply #9 on: February 20, 2012, 02:11:46 pm »
By chatroom I thought an IRC chatroom which is realtime.

One can be set up on a place like Blitzed (blitzed.org) for free, and easily maintained. Once you get the basics of chanserv and nickserv it's pretty easy to use and moderate.

cherrypiper

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Re: ANA should make a Chat Room
« Reply #10 on: March 03, 2012, 07:15:37 pm »
heck i'll support a chat room idea, BUT i am currently in one on another medical issue, and it does take some dedicated folks to police it......The real time chat stuff can get "messy" some times with loonies.
10 mm x 2.4mm surgery date 12/03/07

glad to be here

ppearl214

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Re: ANA should make a Chat Room
« Reply #11 on: March 04, 2012, 06:48:24 am »
As one that Admin/Moderates these forums for a number of years.... I'm in agreement with Jan/leapyrtwins (btw, Jan... how was their birthdays this year?  :) )............   these forums can be (but not always) most time and energy consuming to moderate (please remember we volunteer our time here....).  I, personally, don't have the time to sit at my computer for "chat" sessions.  I'm out.

Phyl

heck i'll support a chat room idea, BUT i am currently in one on another medical issue, and it does take some dedicated folks to police it......The real time chat stuff can get "messy" some times with loonies.
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: ANA should make a Chat Room
« Reply #12 on: March 04, 2012, 02:55:14 pm »
As one that Admin/Moderates these forums for a number of years.... I'm in agreement with Jan/leapyrtwins (btw, Jan... how was their birthdays this year?  :) )............   these forums can be (but not always) most time and energy consuming to moderate (please remember we volunteer our time here....).  I, personally, don't have the time to sit at my computer for "chat" sessions.  I'm out.

For identical reasons...I'm out, too.

Jim



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.

Susan A

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Re: ANA should make a Chat Room
« Reply #13 on: March 04, 2012, 07:17:15 pm »
Maybe it's a generational thing, but I'm not the slightest bit interested in a real-time chat. I really like that I can come online here and read everyone's comments and participate in the discussion when I have time to do so - even if I'm late to the party I can still add my 2 cents to the conversation. Equally, I don't miss out on anything anyone else has to say. I can also get distracted by my real life (my children for example) and still jump back in to the conversation. With a real-time chat, I have to be online at the right time, and focused on the conversation. That doesn't fit my lifestyle right now. It's not that I haven't used real time chat when it suited me - it's just that I think that some people will miss out on the benefits of the conversation here if some of it is real-time instead of asynchronous.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA