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Author Topic: Support your local AN support groups!  (Read 3015 times)

jaylogs

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Support your local AN support groups!
« on: March 28, 2012, 06:25:35 am »
Hello all...so I've been on this "wonderful" AN journey for about 2 1/2 years.  During all this time I've been a part of this discussion forum and have definitely reaped the rewards of the caring and sharing people that are here to support one another.  But, yesterday here in Phoenix I went to my very first face-to-face support group meeting...with real live people and everything!! :) Seriously, it was kind of strange being in the same room with so many people who all have something in common with me.  My wife went with me as well, I really wanted her to go with me so she can maybe gain some more insight into what it is like to be in our shoes.  Because really, even though I am a postie, that journey didn't stop as soon as the last stitch was tied off in my head.  It still continues and I and would venture to say that it still continues for a lot of people as well.  So, while this discussion forum is a wonderful resource and a safe and comfortable place where a person can ask questions and vent if they need to, I would suggest if you have the time and resources (and of course a suitable location) that you attend a local AN support group should the notice pop up here on the forum (there's a special section here on the board devoted to just that!)

I got to meet a few people, one guy who's still deciding what to with his AN, and another lady who's a postie. There were more posties there than not, but it was a good mix of people.  The meeting started off with the former president of ANA (for the life of me her name escapes me) and she highlighted the symposium that was held in Cinci this last year (she's from there). Then we had a local doctor from The Barrow Neurological Institute talk about hearing aids, including the Soundbite...I got to see the display model of it...very interesting.  One interesting thing I learned about Soundbites is that you must have excellent hearing in the good ear, or it just won't work. 

So that's my report...again, if you can get to a support meeting I would highly recommend you do so.  Any questions or comments please post them! Thanks to all if you have made it all the way through this lengthy post! :)
Jay
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8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ppearl214

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Re: Support your local AN support groups!
« Reply #1 on: March 31, 2012, 05:41:36 am »
Jay

Totally agree! I attend as many local ANA Support group meetings as possible (plus organize the local brunches ..... see the thread in AN Community). The opportunity to meet other AN'ers can be so beneficial, especially for those that are in watch/wait.  To see/meet others, first hand, that walk in our shoes and to see first hand that we are not alone, can mean so much. I know it did for me.

Thanks for sharing this!  *raises hand*  I totally agree with you! 
Phyl
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MDemisay

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Re: Support your local AN support groups!
« Reply #2 on: March 31, 2012, 10:38:57 pm »
Jay and Phyl,

I agree as well, today I attended my first NYC ANA meeting today and it was awesome! Nice to know there are some other people to share stories and advice with. Miranda and Lauren did a great job as group leaders. The topic was yoga and relaxation through deep breathing given by Amy Defilippi. At NYU Medical Center in Manhattan.

It is great to share experiences and histories and not to feel so alone in this!

This forum is great!

Mike
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

leapyrtwins

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Re: Support your local AN support groups!
« Reply #3 on: April 02, 2012, 12:27:59 pm »
Wonderful post, Jay.

Only want to add one thing.

Support the ANA through a donation if you can afford to.  The ANA is a small non-profit organization that exists because of charitable contributions.   

Your donation will go to a good cause - an example, is funding this Forum which is free to all of us - and in addition, it's tax deductible.

Jan
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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: Support your local AN support groups!
« Reply #4 on: April 07, 2012, 05:12:17 am »
Aye-men! It helps to keep these forums up and running... as well as everything else the ANA provides to us... which, in my case, I couldn't have done without during my initial days (and even now) of my AN journey.

Phyl

Quote from: leapyrtwins on April 02, 2012, 12:27:59 pm
Wonderful post, Jay.

Only want to add one thing.

Support the ANA through a donation if you can afford to.  The ANA is a small non-profit organization that exists because of charitable contributions.   

Your donation will go to a good cause - an example, is funding this Forum which is free to all of us - and in addition, it's tax deductible.

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

BeckyMax

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Re: Support your local AN support groups!
« Reply #5 on: April 07, 2012, 08:55:41 am »
I attended my first support group meeting just 2 days after being diagnosed.  Talk about good timing.  The people there really helped put me at ease and it was nice to know that i as not alone.
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7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

LisaP

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Re: Support your local AN support groups!
« Reply #6 on: April 07, 2012, 01:09:03 pm »
Hi,

March 31 was the Springfield, Mass meeting and we had 14 attend.  Thanks for continued support.

LisaP 8)
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W
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