Connect with ANA Peer Mentors - available to newbies

[elw101699]

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]

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.   

[mandy721]

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

[Ned]

Be glad to talk with anyone, just pm me.

[KeepSmiling]

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.

[ANA Forum Admin]

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]

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

[John Siwecky]

Hi, just told needed surgery, headaches are severe! Do the headaches go away after surgery? My tumor is 3.5 cm.

[Citiview]

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.

[Abetpds]

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

[AL-Tcw]

Hi, I am newly diagnosed with an AN a little smaller than yours & was wondering how things went for you? I hope well. 

[juliacummins]

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

[Hitylo]

Hi
Am new on the liste and it's conforting to know that am not alone with a AN. Have ben diagnose by luck and my tumor is pretty big, 3.2cm by 3cm. Am supose to be operated soon wicht scare's me alot. i also have a particular situation i am pregnante and i haven't found much info yet on the effect of this event on the tumor the doctors think it might crow faster. Tirereviews


  Thank you all for your time sharing your experiences.

julie

Hi,
I am new here also. Find this forum interesting to discuss many our issues.

[Eardrops]

Thank you.  Very kind of you to offer your time.

[CoopCrafts]

I am new to this and appreciate your advice.  Will call this morning.  My tumor if small and I feel the most sensible think to do is just get rid of it, but of course there are concerns.  I also have asthma....how will I react under general anethesia?  Recovery time?  Options?  So many unknowns.  How do I figure out the right answer?

Thanks,
Ida

Hi, Ida.  I'm a newbie as well and have a small tumor, only 3mm x 2mm.  I'm having balance issues, always feel somewhat drunk and sometimes have vertigo. I've stopped driving because turning my head makes me dizzy.  I'm with you in thinking that getting rid of a now makes the most sense, when I still have as much hearing as I'll ever have.  I wondered if anyone had an argument for or against for us?

Nice to meet you!
Sarah