Author Topic: New support group  (Read 4563 times)

ombrerose4

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New support group
« on: December 01, 2010, 08:37:10 pm »
I'm not sure if this is the right place to post this info, but I would like all our New York members to know that there is a new support group in Manhattan. Our first meeting will be held on Saturday January 8th from 1-3 PM. Please feel free to contact me if you have any questions. I am very excited to be a part of this and welcome any questions, comments or help other support group leaders  or members can offer.

Lauren Goldberg
Manhattan Support group leader.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

CHD63

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Re: New support group
« Reply #1 on: December 01, 2010, 09:48:12 pm »
Yeah, Lauren .....

Congratulations on starting a new group in Manhattan.  We had our second WV AN Support Group meeting last month with 9 of us there.  What a stimulating meeting it was.  So glad Melanie pushed me to keep going after a slow start.  Best wishes on the new group!!

Clarice
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

JLR

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Re: New support group
« Reply #2 on: December 02, 2010, 05:08:57 am »
Hi Lauren, Since I'm north of the city I would be interested in the meeting.  Can you send me details. Thanks! (I am in the 2nd day of my three day CK treatment)

ppearl214

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Re: New support group
« Reply #3 on: December 02, 2010, 05:33:59 am »
Lauren

Moved topic here, with other support group notings..... FYI, once we convert to new site host, there will be a separate forum for these "events/meetings" postings...

*listens to cheer of forumites to hear of new "events/meetings" forum forthcoming......*

Congrats for stepping up to the plate for your ANA patient support in Manhattan and know you will do great! Good luck at your first meet and please let us know how it goes!

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

ombrerose4

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Re: New support group
« Reply #4 on: December 02, 2010, 07:38:06 am »
Thank you Clarice and Phyl for your support. We really need this group in Manhattan and I know it will be good for everyone. JLR, I will send you the info this evening and look forward to meeting you.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: New support group
« Reply #5 on: December 02, 2010, 01:37:37 pm »
Lauren ~

Allow me to add my congratulations on your leadership in forming a Manhattan-based AN support group.  I know it can be a daunting - but rewarding - task.  I wish you a sociable, productive meeting next month.

Jim
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.

suboo73

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Re: New support group
« Reply #6 on: December 07, 2010, 04:26:15 am »
Lauren, 

Best wishes on your new group in Manhattan!


Sue
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9mm X 6mm X 5mm
Misdiagnosed 12+ years?
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leapyrtwins

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Re: New support group
« Reply #7 on: December 07, 2010, 06:51:25 am »
Lauren -

good to see another support group and great to see you've stepped up to lead it - not a small task.

Congrats!

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

ombrerose4

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Re: New support group
« Reply #8 on: December 07, 2010, 01:36:04 pm »
Thanks everyone for all the support! I am really excited about this support group and I know it is greatly needed in the Manhattan area. It will be great to reach out to other people who have been diagnosed with AN's and give them a place where they can share what they are feeling. :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

G_Man

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Re: New support group
« Reply #9 on: December 12, 2010, 06:25:55 pm »
YAY!  I'll be there.  I hope everyone who I met over the summer, at the informal meeting held at a NYC restaurant, will be there too.  They are a real cool bunch!
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Debbi

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Re: New support group
« Reply #10 on: December 21, 2010, 09:38:56 am »
Lauren, so glad you were willing to take the lead on this!  It always seemed so odd to me that NYC didn't have it's own support group.  I will try to make it, but not sure what our schedule is at the moment. 

Happy Holidays,
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

ombrerose4

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Re: New support group
« Reply #11 on: December 21, 2010, 12:10:25 pm »
Thank you Deb! And thanks to Dr. Roland for getting us the conference room. He will be speaking at a future meeting. I am looking forward to getting this NY group together. Hope to see you there if your schedule permits, but if not, next time:)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Debbi

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Re: New support group
« Reply #12 on: December 22, 2010, 06:25:25 am »
Just FYI, you can also probably get Golfinos to speak at one of the upcoming events - he just spoke on a panel at the NJ mini-conference and he was great!   I hope to see you on the 8th!  Meanwhile, happiest of holidays.

Deb
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

MZB475

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Re: New support group
« Reply #13 on: December 23, 2010, 07:07:21 am »
Hi there! Although I'm in the Boston group, I would love to keep in touch about your group as my office is @ 11 Penn (am in NY often). especially if you have a weekday meeting :)!
Laura B
Diagnosed 2008
Wait and Watch--blessed to have this gift :)