Author Topic: Where are the posties?  (Read 10513 times)

Nancy Drew

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Where are the posties?
« on: September 24, 2008, 02:20:35 pm »
Just curious . . . . I have noticed that some of the folks who have had treatment in the past six months are not posting any more.  Is this usual?  I have definitely picked out the regulars on this board, but it seems to me, and I may be wrong, that some people "hit and run" once they have treatment.  Is this because they are doing well and no longer feel the need to be here.  But still, it would be nice to get the positive updates.  I am curious as to what I will do once I have my treatment. 

Nancy ???
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

lori67

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Re: Where are the posties?
« Reply #1 on: September 24, 2008, 02:52:20 pm »
Ah, Nancy - you'd miss us too much!!!   ;D

Some people just come to get the information they need and once they're satisfied, just move on.  Some seem to just read up every now and then, and some people are probably just too busy.  I don't think that necessarily means they didn't have a good outcome.  I think it's nice to be able to give and take what you need from this forum without feeling obligated.

And some of us just enjoy having other adults to talk to every now and then!   ;)

Lori
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.

leapyrtwins

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Re: Where are the posties?
« Reply #2 on: September 24, 2008, 02:59:42 pm »
Nancy -

Lori's right (boy, I say that a lot these days  ;) )  Lots of AN patients use this forum to gather their information and do their research and then they move on.

Then, there are those who are truly addicted to the forum (including me) who just can't seem to "let go"   ;D

Personally I stick around to help others - and get help right back - plus I find the humor here extraordinary  :D

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

Nancy Drew

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Re: Where are the posties?
« Reply #3 on: September 24, 2008, 03:12:36 pm »
Yes, hopefully I will be back with positive post GK feedback!  And, since I was W&W for awhile, I have looked back and noticed that I had some "dry spells".  I have gotten a lot of good info and support here.  And, I hope I haven't made too much of a fool of myself at times.  Thanks everyone.  Nancy :) :) :) 
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

yardtick

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Re: Where are the posties?
« Reply #4 on: September 24, 2008, 03:14:45 pm »
I too stick around because I'm addicted.  I feel like we are a family.  We laugh ;D, we cry :'(, we support one another and when one needs cheering up or encouragement we are all there.  It breaks my heart to read the newbies first posting.  Knowing first hand the fear and uncertainty of the diagnoses ???   

Thank you to everyone on this forum for all of your support.  It has helped me so much and I hope I to have helped others.

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

ppearl214

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Re: Where are the posties?
« Reply #5 on: September 24, 2008, 03:20:07 pm »
I too stick around because I'm addicted.  I feel like we are a family.  We laugh ;D, we cry :'(, we support one another and when one needs cheering up or encouragement we are all there.  It breaks my heart to read the newbies first posting.  Knowing first hand the fear and uncertainty of the diagnoses ???   

Thank you to everyone on this forum for all of your support.  It has helped me so much and I hope I to have helped others.

Anne Marie 

I'm here.. what more could you ask for? ;)

I have to "ditto" AnnMarie.... not only are we family, but I've noted to others how the "torch has been passed along".  Many (esp. radio-treated patients) that I have spoken just move along in life.  Many do fine... and just move along... many, such as myself and so many others, feel the need to help give back when there were so many here for us when we were first diagnosed.  Many here are truly "addicted" to the site  and others just plug along.  I know of many here that are no longer as active as they use to be....but I still keep in touch with many as best as I can, whether by phone or personal email.  Some pop back here from time to time to check on things... and that's ok too. For the Mods, this is a daily reminder of the journey we didn't sign up for since we are here daily.... for so many, it is easier to just move along... or take breaks for a while.

In the long run... you still got us... and that is all that matters :)

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

Boppie

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Re: Where are the posties?
« Reply #6 on: September 24, 2008, 05:49:42 pm »
Hello to all of you,
I only check in once a week or so to pick up on any questions that I think I can offer help on.  I found that by 2 years post op I needed to pull away from the daily reading of symptoms, etc.  The break has helped me to think of myself as normal.  I don't use the phone any more than is absolutely necessary.  Anybody who wants to talk can pm me.  Best wishes to each of you.

Jeanlea

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Re: Where are the posties?
« Reply #7 on: September 24, 2008, 06:27:16 pm »
I must be one of the truly addicted.  I'm been on here nearly daily for three years now!  I chime in when I think I can help.  It's been a great support for me.  And thanks to Boppie, I learned about the TransEar which I truly like.  I feel like as a group we know so much about ANs.  Thanks to all for the info.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

msmaggie

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Re: Where are the posties?
« Reply #8 on: September 24, 2008, 07:05:45 pm »
I need all the encouragement I can get, and once treated, will continue to have squillions of questions.  I t helps me to hear how each of you who has been treated has picked up the pieces of your life and moved on.  It gives me courage to face what is ahead of me.

Mags
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

mindyandy

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Re: Where are the posties?
« Reply #9 on: September 24, 2008, 08:02:44 pm »
I would'nt abandon my AN "family". I know I was MIA for a few months....my excuse is I have a baby  ::)
I am currently 8 months post CK and finally today I am feeling prety good....as oppose to the past few months....UGH....
I do hope my 1 year MRI shows good signs.....I REALLY REALLY HOPE.

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

LADavid

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Re: Where are the posties?
« Reply #10 on: September 24, 2008, 08:41:43 pm »
I'm here for the Jan and Lori Show.  Is there something else?  ;D

In all seriousness, I've noticed that if most people don't have post-op issues, they move on.  They gather pre-op facts, have their surgery, sometimes give us an update, but drop off the radar screen.  Sort of a wham-bam-thank you ma'am jilted lover thing.

I can tell you why I am here.  When I was alone and desperate last winter, this family was there for me.  No one else was.  No one else understood.  No one else cared.  I am very loyal to those who care for and about me.  And I want to make sure that I can share my experience and what knowledge I have, with everyone who is facing surgery or dealing with the aftermath.  Of course I still have my "why doesn't anyone get the wonky-head" issues and why is there no genetic research being done regarding ANs, but at the bottom of it all, I, like other family members on this Forum, want to do the best I can to make sure that every newbie and postie is treated with respect and concern and that their questions can be addressed as best as possible.  I feel the more that stick around, the better -- even if there aren't post-op issues.  One can always give back to the community like several members who really haven't had post-op issues.  In addition, I have discovered a lot of bright, humorous, entertaining, diverse, loving, caring, informative, supportive friends here.  Friends that I hope to have for life.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

mindyandy

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Re: Where are the posties?
« Reply #11 on: September 24, 2008, 08:48:17 pm »
DITTO DAVID....DITTO ;)
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

scarriegirl

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Re: Where are the posties?
« Reply #12 on: September 24, 2008, 11:28:59 pm »
i look forward to being a postie!! 
this safe place has been so healthy and helpful that i look forward to being able to give back!!
in the meantime us "preposties" will just have to stick together and look to the future!

xx
carrie
"when you reach the end of the rainbow there's always another color!"
finally diagnosed 8/08
retro surgery scheduled nov. 17 at boston medical
there is a tennis ball in my ear!! at least it feels like it.

sgerrard

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Re: Where are the posties?
« Reply #13 on: September 24, 2008, 11:38:21 pm »
What a nice topic. I am glad to hear that Mindy is feeling better at last, and that Mags has a "squillion" questions.  :)

As David said, having more regulars stick around is great, and we do seem to get more as we go along. I like the members like Boppie, who drop in regularly, but don't spend all their time here. It gives me reason to believe that life after AN can be reasonably normal.

As long as some of us are willing to stick around and keep it alive, my view is that others are welcome to move on, knowing that we will still be here if and when they need to come back. Forum life is not for everyone, and not being wired to the Internet all the time can be a good thing.

Personally, though, I wouldn't miss it for the world. Except next week, when I'll be on vacation.  8)

Steve

PS: Hey, maybe "prepostie" can become an official term?
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.

Dan

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Re: Where are the posties?
« Reply #14 on: September 25, 2008, 01:17:22 am »
I'm a 1 year postie now and I was always here just don't have much to say.  I think I will always be here so that I can help if needed, maybe just not always actively.  From what I have seen there are alot of people out there like me.  They don't have much experience with ANs except their own but maybe have one special area they will always respond to when the subject is brought up.  Me for example, I will be here if anyone needs help in Germany.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany