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Author Topic: Thank you to this AN Forum  (Read 7161 times)

CHD63

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Thank you to this AN Forum
« on: April 03, 2009, 04:38:57 pm »
As a relative newcomer to posting on this forum, I want to thank those of you who have responded with such positive solutions and outcomes.  It helps so much to be continually reminded that things could be a whole lot worse ….. and most certainly will get better with time.

However, I still feel like an outsider eavesdropping on a wonderful group of friends’ conversations.  I guess that is inevitable at first on a forum such as this and perhaps that will change as I post more.  But, it does make me reluctant to jump in mid-thread.

Not being quite clear about this; is the forum sort of a separate support group, almost outside the functions of ANA?  Also, do very many of those posting on the forum attend the ANA symposiums?  My husband and I are registered to attend the symposium in Chicago in August, but I am wondering if that is actually a different group of people than those posting on the forum.  It would be fun to actually meet some of you that I have “metâ€? via the forum.  Is there a gathering for “forumites?â€?

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

Pooter

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Re: Thank you to this AN Forum
« Reply #1 on: April 03, 2009, 04:49:42 pm »
Clarice,

First of all, welcome to the Forum.. NEVER be afraid to jump into a conversation on one of the threads.  We're all hear to share experiences and therefore we all learn from that shared experience.  You have your own unique journey and the rest of us can learn from that.

Secondly, there are many people on this forum that attend the Symposiums..  There has even been talk of dawning a scarf, or pirate gear or something to differenciate Forum people from non-forum people at the Symposium.  If you and your husband are already going, then you'll very likely have the chance to meet many people that particpate in the forum.  Captn Deb, Jan, Phyl, and Steve are going for sure (sorry if I left you out, but those came to mind).. there are LOTS of others.  I'm still a "maybe" on going or not.

I'm sure there will be a gathering of sorts of forumites there, but nothing that I've seen is set in stone.  Perhaps drinks in the Hotel bar or something..  A bunch of us owe Steve a drink for knitting us this beautiful hat (seen in the picture by my name)..

Jump in, have a ball.. Ask questions, answer questions..  Here, the world is your oyster.  :)

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Cheryl R

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Re: Thank you to this AN Forum
« Reply #2 on: April 03, 2009, 05:09:53 pm »
We find each other quite easily and usually we end up sitting together and eating together at the symposium.       We are always on the look out for the other forumites!               Plus get what group picture we can at some point.      It is such fun to get to meet those we get to know thru here!
                                                                 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

Kaybo

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Re: Thank you to this AN Forum
« Reply #3 on: April 03, 2009, 05:20:43 pm »
Hi Clarice!
Please don't ever feel like you don't belong here - everyone is welcome!!  Unfortunately, as with any group of friends, there are a few "inside" jokes - not because we want to exclude anyone, but because we have experienced these things together!  Like it is NO SECRET that Jan and Lori seem to always stir up trouble, while I on the other hand, am the angelic one of our trio! ::)  Many people are going to the symposium - I am still unsure whether I will be able to attend due to other family commitments but I sure hope so because I want to meet everyone!!  I have to buy Steve (who is fast becoming the biggest lush here) a drink for the great hat he knit me!! ;D 

Give us your 2 cents!!

K
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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: Thank you to this AN Forum
« Reply #4 on: April 03, 2009, 05:33:33 pm »
I will add that the symposiums usually have over 200 people attend.          I have been to the last 3 since I have NF2 and like the info.          Never knew I would traveling the AN way!    LOL!     The last one in 2007 had the most posters.       Maybe 20-25.     A few was there that I did not know were posters as most of us found each other.                    there are the large sessions and then the small ones of the type you picked out.     
   So know you will enjoying yourself, learning some possible new AN info and meeting those who know what it is all about!
                                                                      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

lori67

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Re: Thank you to this AN Forum
« Reply #5 on: April 03, 2009, 06:04:06 pm »
Yes, Clarice, Angel Kay will be busy out saving the world the same weekend of the symposium, so if she can't get some other angel to cover for her that weekend, we won't be able to see her!  Which, of course means that Jan and I will be completely out of control!   ;D

This will be my first symposium and I'm looking forward to meeting my forum family in person.  And rumor has it, Jan is buying drinks for all of us and then taking us on a shopping spree!  Talk about an angel!   ;)

I expect the symposium will be a nice mix of information and socializing with other AN-ers.  For a whole weekend, we'll all feel "normal" again!

Welcome to the family!
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.

CHD63

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Re: Thank you to this AN Forum
« Reply #6 on: April 03, 2009, 06:17:15 pm »
WOW!  Talk about speedy responses!! :o  You all make me feel much better.  Before I was just vicariously (sorry for the big word ..... couldn't find another way to express it  :-[) feeling supported, but now I am feeling actually supported.  Thanks so much!!!

We are really looking forward to the symposium ..... drinking with our AN forum friends will be a hoot ..... don't we have enough balance problems already!   :D

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

sgerrard

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Re: Thank you to this AN Forum
« Reply #7 on: April 03, 2009, 11:19:14 pm »
Quote from: CHD63 on April 03, 2009, 04:38:57 pm
However, I still feel like an outsider eavesdropping on a wonderful group of friends’ conversations.

Hi Clarice,

It rhymes with Paris, right?  ;)

I'm a little worried by your feeling of being an outsider; we are supposed to be an open an inviting forum. But, you did post about it, which is the right thing to do, and now you have been properly welcomed into the group.

Quote
Not being quite clear about this; is the forum sort of a separate support group, almost outside the functions of ANA? 

The ANA hosts this forum, along with all the other activities it pursues to support AN patients, provide information to patients and doctors, and promote AN awareness and education. The director of the ANA even posted here recently, commemorating the 100,000th post; I fully expect her to post again when we reach 200,000.  :D

Membership in the ANA, local support groups, and this forum are all independent of each other; you can find people who do all three, only one, or any combination. I hope many of us will make it to the symposium in Chicago; I look forward to meeting you there.

And seeing you here more as well, now that you are an insider. 8)

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.

leapyrtwins

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Re: Thank you to this AN Forum
« Reply #8 on: April 04, 2009, 07:34:40 am »
Clarice -

As for participating and jumping right in - please do.  You can probably tell, although someone may ask a question of Jim, for example, most times the rest of us will give our two cents worth too.  Anyone can answer any post, so don't hesitate.  We're a tough bunch to keep quiet - despite Kay and Lori claiming to be angels  :D

The symposium in August will be my first - I missed the one two years ago since I had my surgery in late May and was pretty much oblivious to the fact that the symposium even existed.   I am definitely going to be there this time - as are several others - and I am definitely planning on getting together with forumites.  I am a symposium sponsor (yes, the only real "angel" out of the JKL - Jan/Kay/Lori - trio  LOL) and I am working in some capacity as a volunteer, but I plan on having plenty of time to socialize. 

Don't believe the rumors.  Although lots of us owe Steve a drink or two for our beautiful knit hats, it's a well-known fact that all other drinks will be purchased by Steve for the rest of us.  So please make sure you and your husband stop by the bar  ;)

As for the shopping spree, I'm not taking the crowd to Michigan Avenue, but I will make a trip to the Jade Dragon Tattoo parlor if anyone wants.  We'd have to arrange transportation, but it's doable.

Pooter - what do you mean you don't know if you're attending???  I thought Phyl already had a seat for you on the Moderator's Jet.  We'd be very disappointed not to see you in Chicago  :'(   And we all want to meet Jenni.  But on the bright side, if you can't make it Lori, Kay, and I will have drinks - compliments of Steve - in your honor. 

Steve -  thanks for actually answering some of Clarice's original questions - as some of us were too busy horsing around to do so  ::)

Okay, my fingers are getting tired of typing - someone please tell Clarice what a hijack is.  Lori - this is your cue, since you and I can hijack with the best.  Kay's not too bad at it either  ;)

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

CHD63

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Re: Thank you to this AN Forum
« Reply #9 on: April 04, 2009, 10:02:37 am »
Steve and Jan .....

Thanks for the welcome and answers to questions.  Now I am really looking forward to the symposium to meet those of you who will be coming.  (Think I'll pass on the tattoo parlor, however ..... ::))

OK, now I'm curious .... what's a hijack???

Clarice (rhymes with Paris ;))
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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

moe

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Re: Thank you to this AN Forum
« Reply #10 on: April 04, 2009, 10:15:52 am »
You people are too funny! I'm sorta new to the forum, Clarice. I'm still trying to figure this out, and the people/personalities.

I too felt  kinda weird just jumping in. My original  post was "Need support with facial paralysis  issues...." And that got me jumping into all sorts of topics.

I'm almost 3 years post op with some nuances, so enjoy supporting others.

Basically, you sign up, the cyber sky is the limit.
Hope to hear more 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

Pooter

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Re: Thank you to this AN Forum
« Reply #11 on: April 04, 2009, 10:19:09 am »
Clarice or Paris or whatever your name is.. ;)  A hijack is just what it seems.. You're going your merry way down the path of a conversation and whammo someone jumps in and takes a totally different path than the conversation dictates..  e.g. hijacks the thread of questioning.  JKL are notorious for hijacking.  I, on the other hand, NEVER do it.  :)

Jan, I'm still working on getting Jenni to commit to going.  We have childcare to worry about also, so it's been difficult to get her to commit.  I'm still working it though.  Right now, I'm slightly better than 50/50 to attend by myself but worse odds are that Jenni will be there.  I do want to go, though.

Regards,
Brian
Logged
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

sgerrard

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Re: Thank you to this AN Forum
« Reply #12 on: April 04, 2009, 10:44:46 am »
Quote from: moe on April 04, 2009, 10:15:52 am
I'm almost 3 years post op with some nuances...

What a lovely way of putting it. :)

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.

Sue

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Re: Thank you to this AN Forum
« Reply #13 on: April 04, 2009, 01:06:39 pm »
Hi Clarice

I always thought it rhymed with Maurice.  Sort of.

Anyway, welcome and don't be intimidated by anything that goes on here.  You will find this Forum covers the Human Condition quite adequately.  Sadness, grief, pity parties, coping problems, information and medical nuances that I don't think your average intern knows, dissecting every twitch, pain, throb, "wonky headed" issue, victories, set-backs, births and sadly deaths (not AN people, but relatives/friends of AN people) and silliness, black humor, any humor (because as I said some time ago, "What good's a tumor if you can't use some humor to get you through the day or the night."), and often some good old fashioned belly laughs.  Along the way some sincere friendships have been formed and I do think it will last a long time, if not forever for these folks.  Some people like to stay and help others and enjoy the camaraderie of the AN Forum.  Others come, get what they need, and then go quietly back to private life after their treatment.

And you can use big words!  Jim, Steve and LADavid do!  ;D ;)


Anyway, Clarice, welcome.

Sue in Vancouver, WA USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


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Jim Scott

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Re: Thank you to this AN Forum
« Reply #14 on: April 04, 2009, 01:10:26 pm »
Clarice ~

As is often the case, I'm a little late to this discussion but I'd like to add my agreement with what has been stated by others. 

You're very welcome to post on any thread, at any time.  There is no 'pecking order' here, in terms of who can post, although we do have specific categories and prefer to keep messages in the appropriate category.  That is why I'm putting on my moderator's chapeau (an old '30's-style leather football helmet) and moving this thread to the 'AN Community' forum, which is intended for messages that are not specifically related to acoustic neuroma and related issues and/or drift into personal exchanges, which are not a problem and even encouraged, but preferably in our 'AN Community' forum.  I'm sure you'll understand the rationale behind this move.  Frankly, it's one of the main functions of the moderators position because - most of the time - our members are quite well-behaved and little moderating is necessary. 

Clarice, at any time, if you feel you have something to add to an ongoing thread, please do so.  All comments are welcomed.  Yes, some of the 'veterans' (like me) may be a bit more familiar with each other or occasionally post what may appear to be 'inside' jokes but in reality, we're all friends with a common bond.  Unfortunately, that bond is an acoustic neuroma but we support each other and use our collective experience to inform others and our sense of humor to keep things from going all dark and dreary.  Occasionally, we'll have an opportunity to get together socially such as the upcoming April 19th 'AN Brunch' being held at Maxwell's in Worcester, Massachusetts.  I'll be attending that brunch, with my wife, the lovely and gracious Tina.  As a resident of Connecticut, I'm able to attend and I always enjoy the camaraderie.  Regrettably, I'm not able to attend the Chicago symposium in August but I know my AN friends will be posting lots of information and photos here, which I'll enjoy.  I can guarantee you that you'll receive a warm welcome from other 'forumites' when you meet them in Chicago this summer.  Let me add that it's good to have you aboard, Clarice, and I look forward to seeing more from you in the weeks and months ahead.  :) 

Jim
« Last Edit: April 04, 2009, 01:13:52 pm by Jim Scott »
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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.
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