Author Topic: ANA Convention Chicago-meeting friends  (Read 14213 times)

Desilu

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ANA Convention Chicago-meeting friends
« on: August 16, 2009, 03:52:17 pm »
Hi All,

Ann here aka Desilu, just wanted to say that although the Convention was very informative (it was my first one), my favorite part was getting to meet everyone that I have been in contact with for the past 4 years in person! Not only did I get to see everyone face to face but I was able to give tons of hugs too! I really enjoyed myself and hope everyone else did also. I have sent my photos to Phyl and hopefully she will be able to put them on line for everyone to see. Hope everyone has a safe trip home! Looking forward to seeing everyone else's photos. Have a great day, Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

leapyrtwins

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Re: ANA Convention Chicago-meeting friends
« Reply #1 on: August 16, 2009, 06:39:08 pm »
Ann -

getting to meet my fellow forumites was a huge highlight of the symposium.  It was SO great  ;D

I also liked trying out the new BAHA device (BP100) and hearing how wonderful it is.  I can't wait to upgrade!!!

Congratulations to our very own Phyl, who was given a much deserved award by the good folks @ the ANA.

Love ya, Phyl.  Keep up the good work!

Great to meet you Ann.

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: ANA Convention Chicago-meeting friends
« Reply #2 on: August 16, 2009, 07:43:25 pm »
Ann and Jan... honestly, what a genuine pleasure to meet you both... and everyone from the forums that were there (as well as non-forumites... but I have a sneaky suspicion that things are going to be even MORE busy around here with new members as well!).  I'm exhausted.... and the storms in Chicago did not help us fly out... Capt Deb is now stuck in Chicago overnight as her flight was cancelled due to the storms and she'll fly home early Monday am.

Ann, I got the pics and will post tomorrow for all to see.  It was an exhausting trip, but exhausting in a major good way! Thanks for the congrats although I do not feel that I honestly deserved it... as I know many others that should have...... I just do what I feel helps... and for all that everyone does here... I share it with YOU all... as you all are what drives me to continue my efforts. Since I was not able to verbally say anything up on stage, I wanted to extent my thanks to everyone on the forums.. .and those from the WTT list... as its YOU ALL that are my driving force. I am very honored, very humbled, very blessed.

Anyway, glad to be home. I'm going to go snuggle with the bloke and the Queenie Beanie... and hoping everyone else gets proper rest.

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

Desilu

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Re: ANA Convention Chicago-meeting friends
« Reply #3 on: August 16, 2009, 08:23:11 pm »
Hey Phyl,

I left early, can you please explain the award? I'm sure you were well deserving of it! Thanks, Ann

Sorry, Phyl, no need to explain, I just read Mary's post. Pretty Awesome! Way to go!
« Last Edit: August 16, 2009, 08:26:50 pm by Desilu »
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

ppearl214

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Re: ANA Convention Chicago-meeting friends
« Reply #4 on: August 16, 2009, 08:29:25 pm »
I left early, can you please explain the award? I'm sure you were well deserving of it! Thanks, Ann

*notes humbly.......*   2009 Volunteer Achievement Award
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

saralynn143

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Re: ANA Convention Chicago-meeting friends
« Reply #5 on: August 16, 2009, 08:50:28 pm »
Well, let me tell you, after DRIVING home through that storm, Captain Deb is better off staying put for another night. For a while it was do I pull over or don't I . . . I could still see the lines on the road and the cars ahead of me so I kept on. It rained hard from Springfield to the Missouri line, then all nice again. Thing 1 and Thing 2 (Elbee and her frined) slept through it all but my elder daughter was kind enough to wake up to keep me company through the worst of it. We drove through a similar storm in Nebraska on her college tour trip which was even worse because it was at night, so we enjoyed a little reminiscing.

By the way, the Pirate Exhibit at the Field Museum was FABULOUS. I hope some of the rest of you were able to go. We spent two hours in the exhibit and nearly six at the museum.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Cheryl R

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Re: ANA Convention Chicago-meeting friends
« Reply #6 on: August 16, 2009, 09:05:16 pm »
Sara, I meant to tell you good by Fri eve as forgot you weren't going to be there Sat.                 I enjoyed meeting you and was hoping you had a good trip home.       We left at 1 today and am  home and very tired!          We did go thru some rain in IL.
  The symposium was very good and glad to go again!                         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

Migoi

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Re: ANA Convention Chicago-meeting friends
« Reply #7 on: August 16, 2009, 09:39:48 pm »
Made it back to our little hill in the woods. Got lots to say about the wonderful people we met and great time we had in Chicago but my two functioning brain cells have gone comatose. Will scribble in the morrow.

..take care all... tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
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leapyrtwins

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Re: ANA Convention Chicago-meeting friends
« Reply #8 on: August 16, 2009, 10:03:08 pm »
Sorry to hear the good Captain is stuck in the Windy City, but there are worse places to be  ;)

Incidentally she purchased a real kick-ass authentic pirate hat at the Field Museum - hopefully she'll post pictures for all to see.

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

MaryBKAriz

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Re: ANA Convention Chicago-meeting friends
« Reply #9 on: August 16, 2009, 10:16:45 pm »
Hi all,

I enjoyed meeting everyone that was able to attend and hope that those that couldn't this time will be able to next time. Not only was the symposium informative, I agree with Jan the HIGHLIGHT was meeting so many wonderful people.

I hope everyone's trip home was or will be uneventful. I crashed into bed!

Thank you all for adding wonderful memories!

Cap't Deb......Take care and LOVE the new hat!

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: ANA Convention Chicago-meeting friends
« Reply #10 on: August 16, 2009, 11:10:13 pm »
Anyone else think Michael Gates Gill had a great singing voice??

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

4cm in Pacific Northwest

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Re: ANA Convention Chicago-meeting friends
« Reply #11 on: August 17, 2009, 12:41:57 am »
Anyone else think Michael Gates Gill had a great singing voice??



I DID! What a sweet heart he is. The captain and I stayed and chatted with him ...



Steve and I were delayed at the airport and waited around attempting to wi-fi connect my laptop, so to chat, with no luck, as we wanted to get on the forum while waiting for the flight...

It was so great to meet you all. What a a great symposium!

Way to go Pearly Whites on your big award! You rawk! Such a wonderful fun spirit you have! :-*

Hang in there Captain Deb- keep us posted. Hope you do not feel too land locked.

DHM

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Migoi

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Re: ANA Convention Chicago-meeting friends
« Reply #12 on: August 17, 2009, 07:24:34 am »
I've managed to revive at least one of my two functioning brain cells and washed it off with a goodly amount of coffee. Having managed to kick start what passes as cogent thought with me I started to ruminate on this past weekend. First thought was "Wow, waaaay too much stuff, all good, happened to be able to get it all down in printed form. So I'll just stick to some random thought, arranged in no particular order....

A small standing ovation for all those who worked so hard to make this happen. Well done. The incredible variety of topics and speakers, the knowledge level of the various presenters, the smooth flow of the sequences of the events... all absolutely top-notch, primo, A-number-one, excellento, muy bien, brain cramping good. The only problem that I saw in the whole thing is how in the world can they possibly top that in 2 years in Cincinnati? I'm thinking the ANA staff will have a hard time topping this weekends event...I'm equally thinking, after having met them, they will certainly be able to pull it off and we'll all be even more astounded then.

Thinking about the work and effort of all those that put on the event leads me to start thinking about the recipients of this amazing display of professionalism, compassion, and effort... the attendees. I've attended quite a variety of different gatherings for various national level organizations. They are always an interesting experience. Bunches of people gathered together around a common interest. You may know a few people who are also attending but for the most part you wander around amongst a bunch of strangers. It's relatively easy to strike up casual conversations with these strangers due to the common interest, a few polite words, expressions of admiration for aspects of the gathering, exchanging "Yeah, it's too bad .... wasn't better" laments, and delving slightly deeper into some few issues.

The ANA Symposium was different. It felt different to me and after some thought I know why... it was the people attending. Everywhere I went, sitting in the hospitality room, waiting for the workshop sessions to start, in the buffet line, collapsed in mental exhaustion on one of the hallway couches, I would find myself next to a person I did not know and would strike up a casual conversation. Pretty normal national gathering experience except shortly into the conversation I would detect a consistently startling difference in these conversations. These weren't just people making polite, casual conversation with a stranger thrust into their presence...they were genuinely compassionate, accepting people truly interested in making connection between people that had previously been total strangers.  It wasn't just polite chitchat, it was true conversation... thank you all who I was fortunate enough to have held these conversations with.

Alas though, as all good things do, the symposium did come to an end. Reluctantly, we made our way to the airport for the flight back toward our hill. Sitting in the gate area, not really able to concentrate on the book I was trying to read, I started to watch the folks moving around the area. My spidey sense started tingling a bit, something was odd about the situation, something a bit unsettling... I started trying to sort out the reason. I started looking closely at the people and realized what was wrong...it was the people.

I realized that the random folks swirling around the airport were lacking some things I had grown accustomed to seeing in the folks I was around all weekend. The people in the airport seemed to be lacking the lively sparkle of intelligence I saw in the eyes of my fellow attendees (though I will admit to the possibility that at least part of that sparkle was due to our copious use of eye drops, but certainly not all of it). I realized I no longer moved through a mass of people, as I had all weekend,  that had so much acceptance and compassion that it couldn't be contained in their skin and enveloped those that came close to them.

I knew there had been no mass alien invasion which had replaced the rest of the population with pod people. I knew that the folks I was seeing in the airport were nothing more or less than ordinary people, just like I am around all the time. The difference was that coming out of the symposium, surrounded by all the amazing people I had spent time with for three days, I had shifted my perspective such that the extraordinary became my new ordinary and the old ordinary seemed hollow and cold.

I'm sure that over the next few days my perspective will slowly shift back to seeing ordinary people as just ordinary people but right now I'm content to simply bask in the comfort of my brush with the extraordinary... thank you all.

..take care.. tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
http://www.facebook.com/migoi

leapyrtwins

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Re: ANA Convention Chicago-meeting friends
« Reply #13 on: August 17, 2009, 08:02:06 am »
Tim -

as usual, very insightful post.  You are so right about just being able to strike up a conversation with others at the symposium.  I can't tell you how many times I just looked at someone's name tag and started to talk to them.  We shared discussions on doctors, the symposium, our personal AN journeys, etc. - and many, many times I found myself talking about my BAHA; and yes, even showing it to them (abutment included). 

I also told numerous people about the Forum, as most had never heard of it.  I'm sure we'll have lots of new friends here very soon.
 
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

Cheryl R

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Re: ANA Convention Chicago-meeting friends
« Reply #14 on: August 17, 2009, 08:23:02 am »
Tim, I would like to pass on that this symposium is similar to the past ones I have attended.       Some small variations here and there but all well planned and carried out.               The good part is all who attend and I have never met anyone who doesn't right off tell their story as we all have our own story.             It has always been interesting too in how each dr has their own idea of what a particular patient can do when each person with an AN is talked about.            That is what shows how hard it is to make the right choice for everyone.               The drs don't agree and say how it is up to each person to make the choice what is right for themselves in many instances.          Some are for the wait and watch and others are not as big on it.          
I did talk to one couple who this was their 9th symposium.                         I think it was posted that the next one is Cinncinnati.  I talked to an education gal from there who had come to this one to know about it and what will be needed for theirs.
  All of us with balance issues got a good workout from the Drakes quite over patterned carpet.      Some were an interesting challenge.  LOL!                        It was such fun to meet those who are here.      Also super to heard of Phyl to receive the volunteer award.                      I haven't looked at my pictures yet and will pass some on to someone so can be posted due to my problem with not being able to.                        Now it is back to real life and my laundry is calling!                      
                                                    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