Author Topic: ANA WTT (Willing-to-Talk) List available to newbies  (Read 98340 times)

elw101699

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #120 on: February 05, 2013, 02:03:27 pm »
Hi everyone....Just got Dx with AN about a year ago and have seen a radio oncologist and a neurosurgeon.  Im 46 and my lesion is small and the neurosrgeon said usually my case most people choose to zap with radiation, but I was wondering  if any one could share if they had this treatment and if they got any side effects months or weeks later and what were they.  Thanks Im glad I found this forum   steve

terisandler

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #121 on: April 05, 2013, 06:07:25 pm »


Sometimes it's easier to speak on the phone vs. trying to type what you want to say.   I just wanted to share this with you all.

BTW, I am on the WTT list and if anyone needs my good ears, I'm always here for you (whether on phone, email, etc).

Hang in there all!
Phyl
[/quote]

I would love to have someone to talk to and I have not received the willing to talk list.   :)
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

mandy721

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #122 on: April 09, 2013, 10:00:28 am »
Hi Teri,

If you haven't already been in touch with the  ANA headquarters, contact them directly for the WTT list.  The office staff is incredibly helpful and a great source of information.  You can contact them by phone or email -  Phone: 770-205-8211 or 1-877-200-8211 (toll free)
Email:info@anausa.org

Miranda
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

Ned

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #123 on: April 28, 2014, 12:37:27 pm »
Be glad to talk with anyone, just pm me.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

KeepSmiling

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #124 on: October 27, 2015, 08:32:35 am »
How can we get on the Willing to Talk list. My husband had Proton Therapy and he is willing to talk about his favorable outcome.  Thanks in advance for your reply.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

ANA

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #125 on: October 28, 2015, 12:38:27 pm »
Dear KeepSmiling,

Thanks for your interest in the Willing to Talk (WTT) list.  Interested applicants should contact ANA for a WTT packet and application forms.

Take care,

Melanie Hutchins
ANA Support Group/WTT Coordinator 

caryawilson

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #126 on: April 19, 2016, 09:52:24 am »
The phone number, 1-877-xxx-xxxx, is NOT ANA.  The other number looks right.

Admin note:  1-877-200-8211 is the correct number to contact the ANA directly.  I deleted the incorrect number for security purposes.  CD
« Last Edit: April 19, 2016, 11:27:22 am by CHD63 »
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

John Siwecky

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #127 on: October 03, 2016, 05:07:35 pm »
Hi, just told needed surgery, headaches are severe! Do the headaches go away after surgery? My tumor is 3.5 cm.

Cityview

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #128 on: October 04, 2016, 02:05:59 pm »
Hi
The willing to talk list is an actual list of patients willing to talk to you on the phone. If you call the Acoustic Neuroma Association office they will provide the list. You can call someone on the list who has had a similar experience and talk to them.
Sorry that you were recently diagnosed.
I don't know about the headaches, but there might be others who do.
Maybe post your question on another thread where people will notice it more.
Good luck.
Small AN
Successful watch and wait for over 4 years!

Abetpds

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #129 on: April 16, 2017, 09:07:33 pm »
Hi Melanie,
What is your phone number so I can call and talk. I have been just diagnosed with a large AN on the left and need an eat to listen so I can calm down.
Thanks
Regina

Moderator note: I have removed your phone number for your protection.  It is best to use the private message function to share contact information.  Clarice
« Last Edit: April 17, 2017, 05:47:24 am by CHD63 »

AL-Tcw

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #130 on: February 07, 2018, 12:52:00 pm »
Hi, I am newly diagnosed with an AN a little smaller than yours & was wondering how things went for you? I hope well. 
Diagnosed 1/10/18 AN 3.2cm x 2.2cm

juliacummins

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Re: ANA WTT (Willing-to-Talk) List available to newbies
« Reply #131 on: March 12, 2018, 03:20:27 pm »
I had an AN Suboccipital surger on 1/20/1995. I had facial nerve damage (regained almost all with helpo of Dr. John McEleveen in Raleigh, NC, after my surgery in Richmond, VA), hearing loss, an balance problems. 

I am wonering if after all these years as my health has declined to a dramatic effect on my life, I was wondering if my vagus nerve could have possibily been damaged; and if so, what type of surgeon do I contact?

Please note, i have a whole in my skull behind my ear that was never grafted or a metal plate inserted with screws and or rods. I have a whole in my head and whenI press on it, pain radiates through my brain.

I really need help because doctors do not seem to work together to solve problems. They never seemk to get to the route of the problems. My gut instinct never fails me an I am a Christian who believes God gives me these instincts for a reason.

Any help is appreciated.

Julia Cummins