Author Topic: Phyl's Column in ANA Newsletter  (Read 23547 times)

Omaschwannoma

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Re: Phyl's Column in ANA Newsletter
« Reply #30 on: March 23, 2008, 07:28:00 am »
Jan, will follow your suggestion today and email Oprah Show.  Couldn't hurt? 

Kate B are you a Cubs fan?!  I'm up for that day at Wrigley's!  It will be great to get back to my old digs, well sort of, as I grew up and married in the western suburbs of Chicago.  I have family there and will be attending the Symposium, taking in a meal in Greek Town, driving through the "old hood", and now attending the Oprah Show and Cubbies game, WOW!   8)
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

leapyrtwins

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Re: Phyl's Column in ANA Newsletter
« Reply #31 on: March 23, 2008, 09:36:00 am »
Arushi -

actually the email to Oprah was Brendalu's idea.  Don't want to take credit for her great thought.  But the more emails we send, the better.

Kate -

the Cubs would be great, but won't tickets be pretty hard to get for a large group?  Despite the fact that they regularly lose, tickets are usually hot commodities.

PS - Welcome back; hope your trip was good  :)

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

Kaybo

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Re: Phyl's Column in ANA Newsletter
« Reply #32 on: March 23, 2008, 04:53:47 pm »
If Oprah and the Cubs are involved, I would have to check into coming!!
K
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!

jb

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Re: Phyl's Column in ANA Newsletter
« Reply #33 on: March 23, 2008, 09:45:09 pm »
PS: Phyl, I got my newsletter yesterday  -- THANKS -- Very interesting to read about your story and involvement with the forum.

Now back to Oprah and the Cubs......
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

leapyrtwins

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Re: Phyl's Column in ANA Newsletter
« Reply #34 on: March 23, 2008, 10:30:00 pm »
K -

it would be great if you made it to the symposium  ;D

jb -

glad you got your newsletter; still haven't seen mine; am hoping for tomorrow,

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

sgerrard

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Re: Phyl's Column in ANA Newsletter
« Reply #35 on: March 23, 2008, 10:36:59 pm »
So far we have a brunch, beers, whiskey, an Oprah show, and a Cubs game. Oh yes, and a symposium.

I think that Kate and Jan can work on getting a block of Cubs tickets for us - or the tickets to Oprah - or maybe get Oprah to buy us the Cubs tickets... It seems to me that a year and a half should be far enough ahead to get seats.

I'm not knitting hats for everyone, though.

Steve

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: Phyl's Column in ANA Newsletter
« Reply #36 on: March 23, 2008, 10:59:24 pm »
I accept this assignment, but will definitely need Kate to help me out as she seems to know a lot of things about the city that I don't - I'm such a suburbanite!  Can I count on you, Kate?

We'll need to have an estimate of how many will be attending the show and the ballgame - and it would be nice to know the symposium agenda so we don't lose sight of why we will be in Chicago in the first place.  Thanks for the reminder, Steve   :)

It may actually be difficult to fit Oprah into our schedule, since the symposium is on Friday, Saturday, and Sunday and Oprah probably only tapes on weekdays.  Also, the Cubbies may be on the road - anyone know how early their 2009 schedule might be available?

And, Steve, don't worry about the hats; everyone doesn't need one - just me; I'm sure the others will understand.  As my neurotologist likes to tell me - I'm special  LOL

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

lori67

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Re: Phyl's Column in ANA Newsletter
« Reply #37 on: March 24, 2008, 12:46:35 pm »
Well, I'm not a Cubs fan, but I suppose I could go anyway... I did hear mention of beer, right?  Weehooo - then I say "Play Ball!".

A friend of mine was just on the Oprah show - it was taped last week to air in May sometime - something about weird childhood fears or something - she won't spill the beans, but I'll see if she's got some connections to get us tickets...  I do think Oprah buying us tickets to the baseball game would be a nice idea.  I'd do the same for her if I had a show and tons of spending money.

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.

Cheryl R

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Re: Phyl's Column in ANA Newsletter
« Reply #38 on: March 24, 2008, 01:02:37 pm »
I would talk to the ANA about what it is wanted for the symposium as they themselves do not do the work of setting it all up  but do thru an  events organizer.  They have used this one lady for the last 2 and I personally think it has been well done.   Maureen is the events organizer and is an outside company.         There were some organzied outside tours last time.   She (or who ever is the one doing it) could maybe accomplish what just a individual might not be able to do.
The only problem there has been  is having background music at the Sat night banquet which does not work for SSD people and that has went on multiple years.    
                                   Cheryl R
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

ppearl214

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Re: Phyl's Column in ANA Newsletter
« Reply #39 on: March 24, 2008, 01:39:50 pm »
GO RED SOX!!!!!!!!!!!!


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

leapyrtwins

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Re: Phyl's Column in ANA Newsletter
« Reply #40 on: March 24, 2008, 07:22:31 pm »
I would talk to the ANA about what it is wanted for the symposium as they themselves do not do the work of setting it all up  but do thru an  events organizer.  They have used this one lady for the last 2 and I personally think it has been well done.   Maureen is the events organizer and is an outside company.         There were some organzied outside tours last time.   She (or who ever is the one doing it) could maybe accomplish what just a individual might not be able to do.
The only problem there has been  is having background music at the Sat night banquet which does not work for SSD people and that has went on multiple years.    
                                   Cheryl R

So, Phyl, any connections at the ANA Hdqtrs that could give us a heads up on "outside activities" that might be scheduled during the symposium?  Or is there anyone we could lobby for specific activities?  Cheryl also has a good point about the music.  Who do we contact about something like this?

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

ppearl214

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Re: Phyl's Column in ANA Newsletter
« Reply #41 on: March 25, 2008, 02:43:39 pm »
So, Phyl, any connections at the ANA Hdqtrs that could give us a heads up on "outside activities" that might be scheduled during the symposium?  Or is there anyone we could lobby for specific activities?  Cheryl also has a good point about the music.  Who do we contact about something like this?

Jan

yeah, I got me a few connections...... Chicago, eh?  Yep, you all note suggestions and I'll be the big-mouth...er.... requestor... for the suggestions.....

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

leapyrtwins

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Re: Phyl's Column in ANA Newsletter
« Reply #42 on: March 25, 2008, 04:13:55 pm »
Cool, Phyl  8)

I think right now we are at Cubs game & Oprah tickets.  I don't know what types of events the people at ANA usually plan, but those have been the suggestions so far.  It would also be nice if we could have some kind of ANA Discussion Forum reception so that we could meet each other.  Maybe I'm pushing my luck in asking for this, but it's worth a try.  I'm actually seriously considering being a symposium sponsor, so maybe they could some of my donation to fund something like this.

Anybody else have suggestions  ???

Jan
« Last Edit: March 25, 2008, 04:15:36 pm by leapyrtwins »
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

Cheryl R

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Re: Phyl's Column in ANA Newsletter
« Reply #43 on: March 25, 2008, 04:37:43 pm »
You have a name tag that you wear at the symposium and everyone is on the lookout for other forum members.     You soon kind of band together.  There is a hospitality room with places to sit and talk with drinks and snacks.   (tea, and coffee and that type beverages)      It's not hard to find each other if one makes an effort.         Usually the exhibit,lobby areas aren't all that big or spread out.         The ANA should know if the same organizer is doing this symposium.
                                                   Cheryl R
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

leapyrtwins

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Re: Phyl's Column in ANA Newsletter
« Reply #44 on: March 26, 2008, 12:13:33 pm »
Cheryl -

thanks for telling me about this; 2009 will be my first symposium, so I'm kind of clueless as to how it works.  I, for one, will be more than willing to seek out other forum members since I will be attending the symposium by myself - a much needed break from my children.  So, I'm hoping others will want to hang out with me. 

BTW, yesterday I got my copy of Notes - the one I called the ANA and requested -  then today, I got the original one they sent me   ???  My mail person must have finally gotten done reading it LOL 

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