Author Topic: West Virginia Support Group beginning  (Read 3178 times)

CHD63

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West Virginia Support Group beginning
« on: February 15, 2010, 09:36:22 am »
This is to let anyone know who is within easy driving distance of Charleston ..... we are having the first meeting of the newly formed WV ANA Support Group in Charleston, WV on Saturday, March 13th.  This will be a meet and greet, caring and sharing meeting starting at 1:00 at Christ Church United Methodist in downtown Charleston.

Anyone is invited; family members, caregivers, friends, and interested persons are encouraged to attend as well.

Let me know if you have any questions or if you can come.

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

sgerrard

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Re: West Virginia Support Group beginning
« Reply #1 on: February 15, 2010, 10:08:27 am »
Best wishes for your first meeting! It may be small the first time, but remember that acorn to oak tree thing. Support groups are the best, it will be worth it.

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.

lori67

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Re: West Virginia Support Group beginning
« Reply #2 on: February 15, 2010, 11:56:16 am »
Good luck on your first meeting!   :)

Make sure you let us know how it goes!

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.

CHD63

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Re: West Virginia Support Group beginning
« Reply #3 on: February 16, 2010, 10:07:00 am »
Thanks for the encouragement.  Because the current ANA members are so spread apart in WV, it is a bit tricky to determine the best meeting location.  I hope we can spread the word, because I know there are others out there that just do not know about the organization.

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

leapyrtwins

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Re: West Virginia Support Group beginning
« Reply #4 on: February 16, 2010, 12:36:32 pm »
Clarice -

glad to hear there's a WV support group; hope you have a lot of attendees.

Are you the leader?

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

CHD63

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Re: West Virginia Support Group beginning
« Reply #5 on: February 16, 2010, 03:42:13 pm »
Jan .....

Yes, I agreed to be the start-up facilitator with the hopes that someone younger will be able to carry on in the role of leader before long.  We are a very small group, at this point and quite scattered geographically so it will be a challenge to find meeting times and places to reach the most possible.  Any suggestions from you Support Group leaders out there would certainly be helpful.

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

leapyrtwins

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Re: West Virginia Support Group beginning
« Reply #6 on: February 16, 2010, 08:37:15 pm »
Clarice -

I'm not a support group leader, but I know how challenging it can sometimes be from reading posts on the Forum.

I wish my local group got together through informal lunches or dinners, like they do in Phyl's area.  I think that's an excellent way to connect and it's not as "stiff" as a more formal meet & greet.  Just my opinion, though.

Good for you for stepping up to the plate.  I hope your group is very successful.

Please keep us posted.

Best,

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: West Virginia Support Group beginning
« Reply #7 on: February 17, 2010, 07:08:11 am »
Clarice

You are going to do GREAT! Well done for stepping up to the plate! I wish I could join you all (actually be there) but know I'll be cheering you on from afar!  Please keep us updated on the meet.

So many recently (ie: LisaP, Tim, Clarice, etc) stepping up to the ANA to volunteer time/energy to such a terrific cause! I tip my Mod Hat to you all for recognizing that "strength in numbers" really does prevail in our AN world! Well done!

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

LisaP

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Re: West Virginia Support Group beginning
« Reply #8 on: February 17, 2010, 07:37:10 pm »
Best Wishes Clarice,


I am starting my first support group here in Western Massachusetts to be held at our local library on March 13th.

Good luck with yours and cross your fingers for mine!!!

LisaP ;D
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

CHD63

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Re: West Virginia Support Group beginning
« Reply #9 on: February 17, 2010, 09:25:35 pm »
Lisa .....

Good luck to you with the western MA new group.  Ours will be small, but hopefully it will grow as the word spreads.

Let me know how your meeting goes.

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

CHD63

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Re: West Virginia Support Group beginning
« Reply #10 on: March 08, 2010, 03:02:25 pm »
Just bringing this up to the top again to remind anyone within driving distance.  The first WV ANA Support Group Meeting is this coming Saturday, March 13th at 1:00 p.m. at Christ United Methodist Church in Charleston, WV.  AN patients, family members, caregivers, friends and interested persons are encouraged to attend.  This is a meet, greet, and share meeting where we will decide the direction/location we will go for subsequent gatherings.

PM me if you have questions or need directions.

Hope to see you there!

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