Author Topic: Do you ever go to the AN symposiums?  (Read 3692 times)

Tisha

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Do you ever go to the AN symposiums?
« on: November 24, 2008, 12:05:48 pm »
The  next one is in Chicago in August.  I only live 3 hours away and was considering going.  However, what goes on there?  Is it worthwhile?  Do you ever meet people from these boards?

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

krbonner

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Re: Do you ever go to the AN symposiums?
« Reply #1 on: November 24, 2008, 12:21:10 pm »
I went to the last one (2007 in Philly) when I was post-op.  And I'm really glad I went.  It was interesting, informative, fun, and I got to meet a whole bunch of wonderful people I'd known only online.  It's very rare to see a medical conference put on by the medical community *for* the patient community, and it was well done.  It was a series of large presentations on a variety of topics and small discussions, roundtables, and smaller presentations on specialized topics that you can choose from.  Plus evening social events.

I wish I could go this time, but I'll have a new infant that will be depending on me for nourishment and that makes it hard to take a whole weekend off.   ;) 

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Cheryl R

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Re: Do you ever go to the AN symposiums?
« Reply #2 on: November 24, 2008, 01:11:07 pm »
Tisha,  I have went to the last 3 symposiums and very glad I have went.    I have been able to see the House drs who have been there.   They give NF2 as one of the small sessions and got info without having to go to House.               Many of the sessions are closed captioned which helps alot.             Sat am has a contintental breakfast,lunch and then a formal banquet on Sat eve.     Sun am last year had a brunch.         It is over at around Sun noon to 1 and starts Fri 1ish.    Fri eve is off or there are some group meeting you can attend.   
The newsletter and this website will have the whole schedule around the first of the year so you can see all the info.    There is a fee for all this and am thinking it was $165 last time but can't find my info with it now.          They do have scholarships for those with need.               The hotel it is at also will have cheaper rates for us.         One has also been allowed to use that rate to stay a few days longer for sightseeing.                   You will get a name badge with your bag when come and we wrote our forum name also on it.  Your real name and town you are from is on it already.     We soon figure out who the forum members are and band together.   
     I have enjoyed getting to come very much.                         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: Do you ever go to the AN symposiums?
« Reply #3 on: November 24, 2008, 03:50:28 pm »
I was scheduled/booked to go to last years in Philly... but due to last minute schedule conflicts, had to cancel. I can share that as of now, I am 95% sure I will be at the one next year in Chicago. :)

Phyl
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Captain Deb

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Re: Do you ever go to the AN symposiums?
« Reply #4 on: November 24, 2008, 07:37:09 pm »
I went to the last symposium in Philly to try to get some answers for these dang headaches I've been having for so long--there were 2 workshops on headaches there. I made it to one of them, but missed the other one due to a migraine that kept me in bed for most of the last day of the symposium--go figger!  I sure would recommend going for anyone who is in watch and wait or trying to decide between treatment courses. The whole thing was worth it though especially getting to try on the BAHA and Transear simulators and I got to see Dr Rick who scooped out my brainbooger and meet lots of new friends and meet face to face with online buddies.  Besides, the food was great and lots of it!! I look forward to flying my Jolly Roger in Chicago 09! Me and Phyll! HA! Look out!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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sgerrard

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Re: Do you ever go to the AN symposiums?
« Reply #5 on: November 24, 2008, 11:22:12 pm »
Be there, or be square.  8)

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.

msmaggie

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Re: Do you ever go to the AN symposiums?
« Reply #6 on: November 25, 2008, 09:17:31 am »
I have family in Chicago, so I plan to go and be with ALL my favorite people, old and new! :D

Priscilla
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.

Debbi

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Re: Do you ever go to the AN symposiums?
« Reply #7 on: November 25, 2008, 02:50:58 pm »
And Willie and I are definitely in - love Chicago and can't wait to meet eveyrone from the forum.  We'll definitley need to post an album afterwards for all the pictures! 

Debbi, Chicago bound...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Pooter

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Re: Do you ever go to the AN symposiums?
« Reply #8 on: November 27, 2008, 01:16:27 pm »
I hope that Jenni and I can go as well.  It'll be great to put names and faces together as well as get more information that the ANA has to offer..  Besides, Phyl is giving free trips on the ANA Jet and buying all the drinks.  ;)

Brian
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

Tisha

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Re: Do you ever go to the AN symposiums?
« Reply #9 on: November 28, 2008, 11:30:23 am »
Donnalynn,

I was going over what I'll probably be paying out of pocket for my radiation next year, because IF insurance pays it will be out of network.  I think $10K is the maximum I have to pay all year, and I'm sure it will be that.  I don't think we'll be taking a springbreak, I hate to break that to the kids.   Bummer.

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

leapyrtwins

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Re: Do you ever go to the AN symposiums?
« Reply #10 on: November 28, 2008, 03:26:00 pm »
I am definitely attending the symposium in August in Chicago - in fact, I'm proud to say I'm one of the sponsors  ;D

I missed the last one in Philly because I had just had my AN removed a few months prior and didn't get it together in time to register.

From what I've heard from those who have attended past symposiums, they are definitely worth it.

BTW, Pooter, while Phyl is providing the moderator's lear jet, I believe Steve is buying the drinks - and providing the knit hats  ;)

Hope to see you and Jenni (and many, many others) there  ;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

Sue

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Re: Do you ever go to the AN symposiums?
« Reply #11 on: December 01, 2008, 11:02:27 am »
Since I live close to Steve, in the Great Pacific NW, I'm sure I could hitch a ride on the Moderator's jet.  Shoot, I'll even pass out the gum.  I used to do that when I flew when I was a kid.  I even got my Jr. Stewardess wings.  Sure wish I'd kept those!  :)

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


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Pooter

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Re: Do you ever go to the AN symposiums?
« Reply #12 on: December 01, 2008, 02:35:53 pm »
So, if I have it right then Phyl is providing rides on the leer, Steve is buying us all drinks and knitting us all hats and Sue is providing chewing gum on the plane.  And, Jan is the hostess.  And, who was it again providing the garage surgeries at a reduced rate?  ;*)

Brian
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

Debbi

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Re: Do you ever go to the AN symposiums?
« Reply #13 on: December 01, 2008, 02:59:56 pm »
Ah, that would be Lori's husband, chainsaw at the ready...

Debbi ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Captain Deb

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Re: Do you ever go to the AN symposiums?
« Reply #14 on: December 01, 2008, 04:47:48 pm »
We also need someone to tattoo our surgery dates on our biceps or forearms or trampstamp areas.  Me, I want a skull and crossbones wiv a lil pink bow on the left mid fossa area. Of the skull's. I ain't shavin' me head again.

Capt Deb
« Last Edit: December 01, 2008, 04:49:34 pm by Captain Deb »
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW