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Author Topic: Willing to talk???????  (Read 4589 times)

miparent

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Willing to talk???????
« on: March 18, 2013, 09:04:36 am »
Hello.  I'm a newbie, diagnosed with AN one week ago.  I keep reading about a "Willing to Talk" list.  Where can I find such a list?   Thanks for any help.
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CHD63

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Re: Willing to talk???????
« Reply #1 on: March 18, 2013, 11:21:58 am »
You would do well to send for the free informational packet from the ANAUSA.  It contains a wealth of information to help you make treatment decisions, etc. and the "Willing to Talk" list.  See:  http://anausa.org/index.php/contact-us/free-ana-information-packet

Clarice
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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

miparent

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Re: Willing to talk???????
« Reply #2 on: March 18, 2013, 01:17:19 pm »
Thanks, Clarice, for your reply and the link.  I just filled it out so hopefully I will get the packet in a few days.  I was diagnosed one week ago and am so confused about the options that I am going crazy already.  I will be happy to get the WTT list so I can call some people with ANs similar in size to mine (2.1 cm) to see how they arrived at their decisions.  I see you went to HEI--they are on my short list so far.  Did you also consider GK or CK?  Thanks again.
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mandy721

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Re: Willing to talk???????
« Reply #3 on: March 18, 2013, 01:47:56 pm »
Hi,
You can call the ANA headquarters in Atlanta and they will be able to put you in touch with people on the WTT list.  Where are you located?
Miranda
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Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

robinb

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Re: Willing to talk???????
« Reply #4 on: March 18, 2013, 02:16:07 pm »
I had GK at UPMC n January, highly recommend Dr. Lunsford there.

The people on the WTT list that I contacted (about 10) were all extremely helpful. check our the posts under the Radiosurgery section of this website. What was disappointing to me about the list is that there weren't any people that had treatment within last 2-3 years on it. I volunteered to the ANA org to be on it but nobody there has followed up.

Feel free to PM w/your contact info to me if you like and I would be glad to speak w/you.
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AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Jim Scott

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Re: Willing to talk???????
« Reply #5 on: March 18, 2013, 02:28:09 pm »
Quote from: miparent on March 18, 2013, 09:04:36 am
Hello.  I'm a newbie, diagnosed with AN one week ago.  I keep reading about a "Willing to Talk" list.  Where can I find such a list?   Thanks for any help.

Hi ~

Click here to find the 'Willing to Talk' thread with ANA contact information (phone #, e-mail).  http://www.anausa.org/smf/index.php?topic=3252.0

Jim
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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.

arizonajack

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Re: Willing to talk???????
« Reply #6 on: March 18, 2013, 03:17:44 pm »
Also check out the local support group list and see if there is one in your area.

http://www.anausa.org/smf/index.php?board=23.0

There's lots of meetings scheduled for March and April. It would be a good opportunity for you.
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3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

It is what it is

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Re: Willing to talk???????
« Reply #7 on: March 18, 2013, 07:14:18 pm »
The resources have been shared by others.  I and others on this list are also willing to "talk". 

Karen
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.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.
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