Connect with ANA Peer Mentors - available to newbies

[ppearl214]

Hi all,

As we see many newly diagnosed folks logging onto the site that are feeling a sense of anxiety, confusion, etc., I just wanted to let everyone know that if you contact the ANA, they will send you information about connecting with peer mentor volunteers via phone, email or video chat. This is a great way to connect  if you have questions about your diagnosis and treatment options.

I know when I first was diagnosed, I did my websearch and found the ANA homepage.  I contacted the office and they sent me a free patient kit, which included the ANA peer mentor list.  I took advantage of it and contacted a local woman who graciously gave me her good ear and shoulder as I began my investigation into "what the heck am I going to do?".  I am so fortunate that she took the time and energy with me and shared a lot with me.  There is also my "martini-cohort-in-crime" who was my second phone call and gawd bless her for the time/energy she gave me as well.  Jane, you have such a special place in my heart and I thank you SO very much!

Contact the ANA for more information:

ANA
600 Peachtree Pkwy.
Suite 108
Cumming, GA 30041
770-205-8211
mentors@anausa.org

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 a peer mentor and if anyone needs my good ears, I'm always here for you (whether on phone, email, etc).

Hang in there all!
Phyl

Thank you Phyl for this helpful information! Just a reminder that The Peer Mentor Program consists of acoustic neuroma patients who are willing to talk about their acoustic neuroma experience, providing information, encouragement and support to other acoustic neuroma patients. 

There are volunteer participants from all over the country, covering all treatment types, various tumor sizes and representative demographics and talking points.

To get started, please contact the ANA for a free patient kit whether you are an acoustic neuroma patient, family member or friend. Pre-treatment, post-treatment and watch and wait AN patients can all benefit from the support of ANA's helpful volunteers.  You can submit your request via the ANA website www.ANAUSA.org

Best regards,

Melanie Hutchins
Manager, Volunteer Programs and Publications
 

[er]

Thank you ppearl214
 I will check on it, I am not much in writing
eve

[ppearl214]

eve,

I hope you gain from it all that I did.  The chance to speak to someone, other than in writing, was immeasureable to me.

Also, please see in "AN Community" the upcoming NE brunch in Worcester. Meeting others face to face, as well, truly does help.. and we have a good time.  That type of inter-personal connection,  to me, was also extremely helpful.  I hope you can make it.

Phyl

[IdaR]

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

[ppearl214]

Hi Ida and welcome.  Since I am not a  physician, I cannot answer your questions but my hope that some of the medical team you put together for your case will work together to provide you with the most careful and concise treatment plan for you. 

I hope the WTT list also works for you.  I have a feeling it will. Being able to speak to another can truly be a gawd-send in times of new diagnosis or the decision making process.

We all are available to you here on the site as well... and look forward to your contributions regarding you and your AN journey.

Again, welcome.
Phyl

[Stevey]

PPearl,

Was a big help to me, found it before discussion forum, thanks, I highly recommend it!

Cheers,

Steve

[Mark]

Phyl,

How did you go about getting on the WTT list for ANA. As you know I'm on the CPSG and Stanford call lists and would certainly be willing to talk with anyone through the ANA.

Mark

[ppearl214]

Hi Mark,

give the ANA a phone call and let them know!   I can give you a character reference,.... you are one heck of a positive AN character

I think you'd be great. Heck, you did phone time with me and you were an absolute gawd-send.

Phyl

[Desilu]

Hi Phyl and Everyone,

I am on the willing to talk list for the ANA.  If you call them like you said, they will send you a form to fill out. It asks general questions about whether you had surgery or radiation, how was your outcome, etc. Then they will put your name on a list and when people call concerning AN's they send this list out to the" Newbies". I have received both emails and phone calls. I feel Blessed to be able to help! The WTT list was a great idea!  Ann

[lmurray69]

pearl, I want on this list that they can call or email..add me.. What i dont know you do. but will always have support..Linda in MIsssouri....

[grams 11]

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

          i am new too to this forum,i had total hearing loss in my right ear, but thought it was normal hearing loss , i was sent to a ent specialist, and then for mri, i found out i have small tumor , neuroma,  its just about 4-mm, so im not worried as of yet, have to go to sunnybrook hosp, to have more tests done, so not sure yet what to expect. i do have balance problems ,  im sorry i cant give advice .  take care,       joan

[TMARIE]

Thank you Phyl!

[neal r. lyons]

thanks alot pearl  i'll be getting on board w/the WTT  i tried to contact yesterday, but will do so tomorrow 5-29 with the holiday and all  God bless our war vets   i'm still a sucker for a good martini!  take care, bye for now
                                                                                                         neal
                                                                                                           

[Nancy Drew]

Phyl, Just wanted to give some feedback on the WTT list and by all means I do not wish to discourage anyone from finding someone who is WTT.  I was diagnosed with 4mm x 5mm Dec. 2005.  Needless to say it freaked me out when I found out about the AN especially since it was found by accident.  My doctor gave me info about ANA, and I got the packet from them along with the WTT list of people here in Denver.  I called the first person on the top of the list, and to be honest, my conversation didn't go so well.  The woman had a totally different situation than I did, and I couldn't relate at all.  Her AN was like 3 cm when it was discovered, and she had surgery and suffered a whole lot of problems before and after her treatment.  I do admire her very much for what she has been through, but at the same time she pretty much scared me to death.  I hadn't done much research on ANs when I called her so I didn't realize that everyone's AN is different.  I don't know if these people have training as far as the WTT thing goes.  I think it would be helpful if they did.  This woman talked about her situation throughout the 30 min. phone call.  I wasn't able to get a word in.  When I finally hung up the phone (went and rang the doorbell to end the conversation), I was exhausted and very frustrated.  I immediately tore up the list and said to heck with talking to anyone about the AN.  In retrospect I guess I should have tried someone else on the list to be fair.  So, I just wanted to relate my story just in case someone else encounters the same situation.  Maybe this forum is the best for me anyway.  Perhaps a call to ANA would help so they can give better instructions to the WTT person.  Best wishes to all of you especially to those newbies out there.  I think it is normal to freak out initially and over time I think it starts to sink in and you realize that there are a lot of helpful people out there to relate to.  This forum has really been a helpful outlet for me.    Nancy

[Juliette]

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.  Thank you all for your time sharing your experiences.

julie