ANA Discussion Forum

General Category => AN Issues => Topic started by: ppearl214 on March 19, 2007, 06:48:21 am

Title: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on March 19, 2007, 06:48:21 am
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 office, they will send you a WTT (Willing to Talk) list of folks that volunteer time to speak on the phone to those that have questions about their 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 package, which included the ANA WTT 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! ;)

To contact the ANA directly for the WTT list, they can be reached as follows:

ANA
600 Peachtree Pkwy.
Suite 108
Cumming, GA 30041
Phone: 770-205-8211 or
1-877-200-8211 (toll free)
Fax: 770-205-0239 or
1-877-202-0239
Email:info@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 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

Thank you Phyl for this helpful information! Just a reminder that The Willing to Talk Program (WTT) 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. 

The WTT list includes 50 volunteer participants covering all treatment types, various tumor sizes and representative demographics from across the US and provides contact information for each.

Please contact ANA for a complimentary packet of information 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 online form at https://www.anausa.org/component/rsform/form/4-ana-contact-us?Itemid=448 (https://www.anausa.org/component/rsform/form/4-ana-contact-us?Itemid=448).

Best regards,

Melanie Hutchins
ANA Support Group Coordinator

 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: er on March 20, 2007, 04:28:03 pm
Thank you ppearl214
 I will check on it, I am not much in writing
eve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on March 20, 2007, 05:05:42 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: IdaR on March 21, 2007, 06:46:25 am
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on March 21, 2007, 09:52:44 am
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Stevey on March 25, 2007, 11:30:43 pm
PPearl,

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

Cheers,

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Mark on March 28, 2007, 11:58:57 am
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on March 29, 2007, 12:11:37 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Desilu on March 29, 2007, 05:52:23 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lmurray69 on April 07, 2007, 08:34:00 am
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....
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: grams 11 on May 11, 2007, 04:17:27 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: TMARIE on May 21, 2007, 12:39:21 pm
Thank you Phyl!
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: neal r. lyons on May 28, 2007, 12:46:03 pm
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
                                                                                                           
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Nancy Drew on June 13, 2007, 02:32:17 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Juliette on July 31, 2007, 05:53:47 pm
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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Boppie on August 11, 2007, 12:30:03 am
I'd like to compliment the ANA on the idea of the WTT List.  I'd also like to send my respects to the brave patients who venture forth to call the list.  I have found callers and inquiries to be based on well formed lists of questions and concise requests. 

I do feel it important to not give a rundown of our own story.  I feel it is necessary to answer the questions of the caller and not allow histrionics to cause stress.

I am sorry to read that a patient would be be put in a more stressful situation by a phone call that was designed to help.

Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Don Winslow on August 20, 2007, 02:46:49 pm
    Hello all.  I am an oldie (age 77) who has not corresponded in several years but I have a question.  I had radio surgery on my 9 mm AN several years ago and learned to live with minor dizzines.  But during the past moinths, I have experienced what I call "a head full of wet sawdust" whose symptoms are dullness, difficulty in reasoning, depression, need to sleep, etc.  No pain.   
     The symptoms are similar to those of Meniere's disease but that was ruled out by my doctors at Mayo-Jacksonville. They told me several years ago that they couldn't help me with the symptoms.  Do others have these symptoms?  If so, how do they deal with them? 

      Thanks, Don Winslow
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Boppie on August 20, 2007, 03:42:06 pm
Hi Don,  I am 65.  Welcome to this forum and make yourself at home here.  There are threads here for symptoms, and Meuniers references; you'll find great information plus a few old patients like me!  :)  Use the search tool and plug in your keywords.

Have you had a recent MRI to look at the necrosis of your former AN?  I mean, since you were treated for a small tumor, you'd like to see if the scar tissue is the same.  You might need to fein pain in the head to get the MRI but heck the test is security to know what you are dealing with for sure.  As for the "symptoms" I'd want to get the diagnosis of the symptoms nailed down and to have a look at my own MRI.  There are medications for all sorts of symptoms.  What do they mean?...can't help you?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ixta on August 20, 2007, 11:24:27 pm
I am free to contact if anyone is investigating SkullBase Institute. Feel free to mail me here for contact info, I dont want to put my contact info in theforums. see my SBI topic under Microsurgery options before contacting..most questions are answered there.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: irene on August 23, 2007, 08:22:35 pm
Hi I'm a new member, 6mm Lt AN compressing my cochlear apparatus causing dizzinss, decreased hearing and horrendous tinnitus so my oto neurosurg here  is sayi ing time to operate. But he can only go retrosigmoid which will make my chronic severe migraines worse. Is it logistically easy to travel cross country and have the surgery done at House topreserve my hearing?  I need my hearing for my job so i want to maximize my chances of saving it and Dr. Brackman seems to have the best results.  Any thoughts?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on August 23, 2007, 09:15:00 pm
Irene -

I don't think any doctor can guarantee preservation of hearing.  You definitely want someone who will do his/her best, but if someone guarantees you something 100%, I'd be leery.  I could be way off base here, but I think any experienced doctor who performs retrosigmoid tries to maximize preservation of hearing, otherwise he/she would do translab.

From what I understand House has a wonderful reputation, but there are also other very qualified, reputable doctors who perform AN surgery.  I had mine done in Illinois and could have not possibly traveled cross country, nor do I feel I needed to.  I found incredible doctors right here in my own backyard.  I think the main thing with surgery is experience.

Jan
 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Mark on August 23, 2007, 11:45:24 pm
Irene,

Is there a reason you are not considering radiosurgery for an AN that small?

Mark
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: firewalker on November 16, 2007, 12:22:56 pm
I'm so appreciative of ANA's WTT list. I'm a newbie as well and because of this list, was able to contact a LIVE person that helped me get started on my AN quest for the right surgeon. Jan Leapyrtwins was my first contact on this list, and I choose her because she lives the closest to me. She was able to direct me to support groups in my area that weren't on the list and gave me the heads up on this forum. Thank you Jan!!!

I've never particiated in a forum and have found this source to be incredibly helpful at this difficult time. I'm so grateful for the WTT list and for all of you!

~Firewalker
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on November 19, 2007, 09:26:45 am
Firewalker -

You're welcome.  I'm so glad I could help you.  After my surgery I became a member of the ANA and received the WTT list.  I found some wonderful people who told me about their experiences and gave me some great tips on the BAHA. 

Helping each other is what this forum is all about,

Jan

Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Dee on December 23, 2007, 12:22:28 am
Hi, I wish I had the courage to talk to this forum before my surgery in the Spring.   :-\  I was scared & didn't know what to expect.  My sister gave me so much research on A.N. & I was overwhelmed.  The surgery to remove a 2cm. Tumor was successful but of course I have no hearing in my right ear & had facial paralysis which is now slight.
I definitely did not expect to have to go through physical therapy for walking.    I check your forum once in  a while when I have a concern & hope to be able to contribute when I can.
    
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: summer on January 01, 2008, 12:28:41 pm
  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

Trish Butler
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on January 02, 2008, 08:48:14 am
Trish,

thrilled to see you listed as well....

Folks, Trish is a terrific lady with lots of love and great advise to share...... I'd take her up on it! :)

Phyl



  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

Trish Butler
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Denisex2boys on January 22, 2008, 03:44:02 pm
Hi there ..... I am just wondering if there is anyone on the 'willing to talk' list that uses MSN messenger?  Either via webcam 'text messenging' or computer calling ....... if anyone wants to contact me on MSN - - search for denise_dougall@hotmail.com ....... I would look forward to a 'chat' with one or a 'group chat' .........  I will be needing lot's of encouragement these next couple of months - and could also probably offer some :)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Kaybo on February 12, 2008, 04:25:04 pm
I called today to find out more info about the WTT list.  Obviously there is no support group here, so I hope I can be a helpful resource in this area!!  Can't wait to get the papers!
K
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on February 12, 2008, 05:14:06 pm
K -

that's great news.  I've been on the WTT list for a while now and I find it's a great way to help others.  Being a resource is very fulfilling.   ;D

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: rebecca1 on February 25, 2008, 09:38:37 am
Hi - So glad to hear you are doing well.  My husband was just diagnosed with 1cm AN left side.  All the options!!!!  We are considering Cyberknife.  Do you know where we can get good unbiased info on the difference between Cyber and Gamma?  I am really unclear about what the differences are.  I know amount of treatments is different, the head device, but is it the same type of radiation?  Same amount of radiation? 

Thanks for any info- 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on February 25, 2008, 02:59:24 pm
hi rebecca to you and your husband. I am glad you all found us as this site is filled with a wealth of info and experiences and thoughts, etc, about our individual AN journeys.  If you have time, take a look at the "Radiation/Radiosurgery" discussion forum. There is a lot of info there and many of us (myself included) that have had radiosurgery on our AN's....

Please give your husband my best regards and please remember to take time for yourself, as well.

Again, welcome.
Phyl
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: rebecca1 on February 25, 2008, 03:18:44 pm
Also, does anyone know a good cyberknife surgeon?  We live on the east coast of S Florida.  There is a cyberknife facility near us, but I cannot find a surgeon trained in cyberknife who has experience with AN.  We would be willing to travel anywhere to get a really experienced doctor.

Any help or advice would be GREATLY appreciated. 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on February 25, 2008, 05:17:41 pm
Hi rebecca,

there are many CK locations in S. FL... you can go to the website (http://www.accuray.com/CyberKnifeLocations.aspx?id=574&LangType=1033) and do a search by FL or zip code to help find a center near you.  As you may know, radio-surgery isn't "surgery" as you would think cutting with a scalpel (did I spell that right?).  A neurosurgeon, neuro-oncologist and radio-oncologist are typically the lead physicians when opting for CK (and many other forms of radio-surgery). There are also many others behind the scenes but these are the folks to generally meet with in discussions of CK or other radio-treatments.

I hope this helps.
Phyl
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: MaryBKAriz on March 25, 2008, 09:10:34 am
 :) Hello from a Newbie in Arizona. I just got the news yesterday from my ENT that my MRI showed the AN in my right ear. I am lost right now and I see a specialist tomorrow and don't want to be an idiot. I have read a lot in the last 12 hours but I don't have the insight of someone who has "been there". I am having a fair amount of hearing distortion, ear pressure, imbalance, dizziness and occasion . No facial symptoms, though, I am thankful to say. I appreciate finding this sight. I live in Chandler and will be seeing a physician in Phoenix who is connected with the Barrow Neurological Institute. I have never heard of this condition before. Since I kknew I had a problem I am basically relieved it isn't malignant, but not happy with some of the decisiions, outcomes, procedures ahead. Thank you for listening.  Mary
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on March 25, 2008, 12:19:11 pm
Hi, Mary, and welcome -

I'm glad you found us too  ;D 

There is a lot of information on this forum, but I also suggest that you contact the ANA and ask them for some informational brochures.  Being diagnosed with an AN is not only shocking, but stressful and confusing - since the average person doesn't know what they are.  IMO the brochures are very helpful in explaining ANs and treatment options, and in addition, they are written in basic language that is easy to understand.  The ANA can also give you a list of patients WTT (willing to talk) about their experiences by phone and/or email which may be helpful to you - there are most likely some patients in your area.

Good luck with the specialist tomorrow; let us know how your appointment turns out.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lori67 on March 25, 2008, 03:04:34 pm
Hi Mary.  Welcome to the club. 

I'm sure all of the information you've found can be overwhelming.  And don't worry - you won't look like an idiot - I didn't even have a chance to research AN's prior to my meeting with the doctor so I'm sure I asked more ridiculous questions than those that are informed beforehand.  Besides, no question is silly or idiotic when it comes to your head!!

Hopefully after your appointment you won't feel as lost and you can always count on some good, honest input from this site!

Good luck at your appointment!
Lori
p.s.  I'll be in Arizona next month to visit the in-laws - closer to Tucson though.  It's so pretty out there.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on May 03, 2008, 11:10:21 am
Thanks, Richard.

Glad you found this website and this forum.  It's been invaluable to me - and I'm so happy it is for others, too  :)

Mind if I ask - are you a patient or family member?  Having treatment, thinking of having treatment, done with treatment?

If there are any specific things we can tell you about, please just ask.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: zeek on May 16, 2008, 08:38:20 pm
I see where IDAR wanted to know about her astma. I also have astma and was out for 24 hours before I woke up. And my astma was accutally better while I was in I.C.U. than at home. They did an exellent job. I wouldn't sweat it.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sher on May 22, 2008, 02:25:29 pm
Thank you,
I called and they are going to send me the packet. I do so need the WTT list.
Sher
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on May 22, 2008, 10:55:38 pm
Thank you,
I called and they are going to send me the packet. I do so need the WTT list.
Sher

Sher -

IMO you'll find the WTT list is a wonderful resource.  I'm on the list myself and I find that the people who call me are so glad they are able to make a connection with someone else who can relate to what they are going through. 

I live in Illinois and my phone number and email address are on the list.  Feel free to call or email me if you'd like.

Jan (Benjamin)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: MAlegant on July 12, 2008, 10:44:39 am
Can anyone tell me how to download a picture (for my profile) from a mac?  I figure I ought to put my pre-surgery smile out there while I still can.  :D
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on July 12, 2008, 11:07:49 am
The picture needs to be on a public web server somewhere, such as http://photobucket.com/. Once you have done that, you put a link to the photo in the space provided in your profile setup. One hint: making your photo a square will prevent it being distorted when it shows up in your posts.

Steve

Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: MAlegant on July 13, 2008, 07:55:46 am
Hi Steve,
Frappr should work as well, yes?  Still can't get it to work, alas.  Is there another site, other than photobucket?  Photobucket wants to charge a fee through my cell phone, but my boss pays for that and I don't think I want to do that.  Thanks for putting up with the trivial questions.  It seems as if the small things are so much easier to deal with (and control) at the moment.
Thanks,
Marci
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on July 13, 2008, 05:04:59 pm
Any web site will do. Photobucket offers to do something with your cell phone, but you can leave it blank and skip all that. I just registered myself for fun.

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: MAlegant on July 13, 2008, 05:44:57 pm
Steve, look!  I got my picture to upload. (Well, it's a little stretched out but it's me, small victory)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on July 13, 2008, 05:48:37 pm
There you go! Now the hint about make the picture a square comes into play...:)

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on July 13, 2008, 07:07:13 pm
HI Marci and welcome.  You sure "look" good! I'm glad to see that Steve was able to help you out (Hi Steve!btw... where's my hat? ;D) and welcome to the site.  I hope you find information and support here that you seek.

Wellness wishes to you,
Phyl
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: pauline on August 03, 2008, 07:47:08 am
Thanks!  I joined the ANA organization and contacted the local person in Phoenix!  I am newly diagnosed with AN and just being able to read all the info out there has been very comforting for me.  I am looking at cyberknife and have been reading all the comments from people who have had this procedure.  I also look forward to reading about those who have most recently had this done.  I thank all of you out there as you have all help me understand and cope with what is happening with me.  I have a more positive attitude in my journey as I have all of you "hold my hand" along the way!   

Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on August 03, 2008, 08:36:21 am
Pauline -

I believe Tumbleweed and DebbieL are two of that latest forumites to have CK.  You might find their posts - as well as the posts of others who had CK - very helpful.

Good luck,

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Kaybo on August 24, 2008, 06:02:02 pm
Donna-Lynn~
I just sent you a PM!!

K   ;D
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mikado on September 03, 2008, 04:57:25 pm
First appointment with Nsurgeon next Wed.

Initial symptoms X-mas morning Dec. 2007. No prevous warning, awoke with bed spinning and unable to stand...so much for our Turkey dinner! House-bound, unable to function normally, unable to drive.

MRI showed 1 cm. AN in May (hearing 100%).  As of August 2008, all symptoms have disappeared. No dizziness, vertigo, nothing. I feel great, normal again.

What does this mean?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on September 03, 2008, 06:33:06 pm
I'm assuming you're asking what your lack of symptoms means, but I'm not certain.

Lack of symptoms means absolutely nothing.  Some patients have huge ANs and small symptoms, some have small ANs and big symptoms - we're all different.  If your symptoms have disappeared, that's wonderful - but if your MRI showed an AN, it's still there.

At 1 cm you can watch & wait if you want to, but IMO you might want to look into treatment while you still have 100% hearing.  As your AN grows, you might find you have diminished hearing.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sunray on September 03, 2008, 07:06:05 pm
Hi, I did contact ANA so I do have a WTT list but I am a virgin to the forum so please bear with me.  I have NF2 and as a result, I had bi-lateral acoustic neuromas.  I've had 4 craniotomies spanning 10yrs.  My most recent was 4/16/08.  I had an acoustic neuroma that was a little over 5cm on my left side. I also had 2 cochlear implants which did not work. I'm not 100% yet but I am so ready to go back to work. I guess my reason for being here is because in my world, there is no one like me. I guess I am just looking for someone who understands. I'm pretty optimistic and fairly well 90% of the time.  Its that last 10% thats a stinker. :) Thanks and hopefully I'll get the hang of this.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lori67 on September 03, 2008, 07:43:45 pm
Hi Sunray.

Welcome to our little world where there are plenty of others like you!  Not all of us have NF2, but I think all of us AN-er's can understand at least part of what you're going through.  And there are NF2-er's here who will definitely know!  So, no reason to feel alone - we're all in this together!

If you are optimistic 90% of the time after all you've been through, then I think you're doing quite well!  Don't let that 10% get you down.  Everyone has their bad days and I know lots of people with no medical problems who seem to have them more than 10% of the time!   ::)

And don't worry - you'll get the hang of this - it took me a little while too.  Hard to teach an old dog new tricks I guess!  If you go to the Home page, there should be a section for discussions specifically related to NF2, so you might find that helpful.

Feel free to send me a PM (Private message) if you like.  I'm sure you'll find many friends here!
Lori
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on September 03, 2008, 10:02:35 pm
Hi Sunray,

I hope you get the hang of it too. Don't worry about doing the "wrong" thing. We all make mistakes - in fact one of the moderators just made a doozy a few days ago. If you have questions about using the forum, just ask. There are also some helpful hints at http://anausa.org/forum/index.php?topic=2823.0.

There are some NF2'ers on the forum, although most are regular AN'ers. Jeff and Tony and Raven come to mind; they are around fairly regularly. Speaking of doozies, a 5 cm AN is a big one. I'm glad you are past that now.

You sound like you are in pretty good spirits, at least 90% of the time, and that is a great thing. I hope you find the forum useful, or at least a source of comfort. Welcome.

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on September 04, 2008, 04:05:20 am
Hi, Sunray and welcome to the forum; we're thrilled to have you here  ;D

As Steve and Lori mentioned we have NF2ers here, as well as regular AN patients.  Steve mentioned a few NF2 members; there's also Cheryl R and Dealy (Ron).

It sounds like you've been through a lot and I commend you on an outstanding attitude. 

I'm sorry to hear that your cochlear implants didn't work.  There's a wonderful thread started by Jeff that talks about his ABI which might be of interest to you.  Here's the link http://anausa.org/forum/index.php?topic=6645.0

Don't be a stranger around here  :)

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies (newbie here)
Post by: sunray on September 04, 2008, 08:11:47 am
Hi,

I posted!  Yay! Lol.  Lori. Steve, Jan :  THANKS Bunches for welcoming me. I truly appreciate it and look forward to forging friendships and finding my way around the forum.  Thanks for the invite Lori and I think I can be reached by PM also so hit me up 2. :) My next project will be trying to insert a picture. Lol. Oh Boy, that should be interesting. Yeah Steve, the 5cm was a definite major hiccup in my year. I"m walking again and driving so thank God. I still have left side facial nerve paralysis. I never LOOk happy or sad just indifferent which is hilarious to me but no one knows it bc I have facial nerve paralysis. LOL. My eyes do bother me more this time around which sucks bc I'm a book addict. Anyone have any pointers on how not to become a hermit?  In the past I've been very social but now I tend to shy away for fear of not being seen as normal. Is this feeling normal or am I nuts?  :-\
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Cheryl R on September 04, 2008, 08:19:03 am
Sunray, I will get you written later today as am having to leave for a while.        I am also NF2 but the older adult onset version.         I have had 3 ANs and 4 surgeries since 2001 and have done really  well but been thru much more than I ever wish I have been.               My last surgery was on 4/17/08 so the day after yours.           I will PM you as I have written my story too many times and gets kind of boring to those who know it.                             More later,
                                               Cheryl R
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sunray on September 04, 2008, 10:17:04 am
Hi Juliette, Welcome and I'm new 2. I was pregnant and actually a week from my due date when I was first diagnosed.  Fitting me in the MRI was a feat in itself.  Just don't be afraid to ask questions here and to the docs.  Make sure your surgical team has previous AN experience and speak with ur OB/GYN. How far along r u?   I had my surgery 3 mos after I gave birth via c-section but I was practically ready to pop when they found them ( I have NF2 so I had ANs and blah, blah, blah). I was also considered high-risk prego and I had a team of awesome OB/GYNs during my delivery.  My son was healthy and is now 10 yrs old and growing like a weed. Just know u r not alone.  We're all here and we so get how u r feeling.  :)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on September 04, 2008, 01:43:15 pm
Sunray -

here's a link on how to post profile photos.  Hope it helps  :)

http://anausa.org/forum/index.php?topic=7238.0

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: LOIS on September 11, 2008, 09:24:43 pm
Idar,

Read your post.  I also have asthma.  It was not a problem.  Just make sure to tell the dr., anesthesiologist and anyone else involved you need breathing treatments after surgery to get it all out of your lungs.  I was told a long while back when I had a bad experience after emergency surgery to do that.  This surgery went fine with the asthma.  My dr. and everyone else was right on top of it cause I let them know.  Its been 2 weeks since the surgery and asthma has not been a problem at all.  Hope that helps somewhat in your desicion making.

Lois
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: vjgfamily on October 23, 2008, 09:50:35 pm
Hi. I had acoustic neuroma surgery 20 years ago. At that time (1988), the surgical procedures were in their infancy, but I found the best doctors possible (Los Angeles). The doctors in Oklahoma (Tulsa) had only done a handful of these surgeries, so I found a couple of more experienced ones in LA. I was young, and my recovery only took about 6 months...although I still live with repurcussions. But, I'm living well........and you can too. Let's talk.

Also, from my personal experiences, I can discuss the following:

Symptoms
Surgery
Recovery

Also, what is BAHA?
Title: Newbie with 3.8 cm AN
Post by: leapyrtwins on October 24, 2008, 07:15:23 pm
A BAHA is a bone-attached hearing aid.  Basically a titanium rod implanted in the skull that a tiny hearing aid (processor) attaches to.  It's for those who are SSD (single-sided deaf).

Here's a link that explains the scientific stuff behind it http://www.umm.edu/otolaryngology/baha.htm

Here's a link to pictures of mine http://anausa.org/forum/index.php?topic=6634.0

It's very cool technology  8)  I highly recommend it.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on November 09, 2008, 12:37:50 pm
I have moved a recent set of posts to its own topic:

Alicia (Alicia678): New with 3.8 cm AN, http://anausa.org/forum/index.php?topic=7978.0

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: bern on December 19, 2008, 06:16:47 pm
I hope you can help me.  I had gamma knife rad. in July.  My an was about the size of an m and m.  Since treatment, i have developed a chronic, severe ear pain that nothing seems to help.  My doctors are of no help.  I go for another MrI in January.

What do you know about this ear pain that I have?  What shall I do?  I have called my neurosurgeon again today and still no call back. I really need pain relief.

any advice would be appreciated

Bernadette
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Hexe on February 26, 2009, 10:36:45 am
Hi, I am about 4 weeks post-op had a translab and am deaf on that side and wear a hearing aid in my "good"ear.
I am still experiencing dizziness, poor sense of balance, double vision, and am missing some common words.
Is all of this normal or should I call my doctor?
Any idea how long this will last?
Does amyone have experience/knowledge about bi-cros aides; like cost and merits of different brands?
I am also not very computer savy so I hope I will post this and receive replys.
Thanks,
Hexe
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on February 26, 2009, 10:49:44 am
Hi, Hexe -

the symptoms you are experiencing (dizziness, poor balance, and double vision) are very common post op and generally go away in time.  Everyone's AN journey is different so it's really hard to say how long your symptoms will last.

As for the bi-cross aid, I did a search and here is a topic you might find helpful  http://anausa.org/forum/index.php?topic=7877.0

If you put bi-cros in the search box at the top left-hand side of your screen you'll find other posts related to the bi-cros aid.

Good luck,

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on March 05, 2009, 01:37:53 am
Pamk: I moved your post to a new topic, so more people would see it.

http://anausa.org/forum/index.php?topic=8885.0
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lauralynn on March 12, 2009, 09:02:26 pm
Hey Pearl,

My surgeon actually gave me a pamphlet for the ANA and I sent for the package.  I have emailed 3 people so far and they all have been so sweet and said I can call them anytime.  I actually plan on it this weekend.  I'm so glad that I found this forum!  I know it's going to help me before my surgery and after.  Pearl on my last post I think I mentioned that the doctor said I'd have to do one session of Gamma Knife.  I haven't been able to follow up w/ him and ask about that but as soon as I do I will let you know what he says.  I know when I did ask at my appt. I was surprised when he said I would only need to have one treatment of the Gamma.  Only having to do one treatment would be nice though!
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: sgerrard on March 12, 2009, 10:15:19 pm
I think I mentioned that the doctor said I'd have to do one session of Gamma Knife... I know when I did ask at my appt. I was surprised when he said I would only need to have one treatment of the Gamma.

Gamma Knife is usually done in a single treatment. It is CyberKnife, and sometimes other machines, that do 3-5 treatments.

Steve
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Vivian B. on March 13, 2009, 08:12:53 am
Hi Joan,

I noticed you said you have to go to Sunnybrook Hospital. I am assuming you are from Ontario. Who is your surgeon/Neuro. I am also being treated there.

I have a meningioma in the 7th cranial nerve about 8mm. I saw Dr. Nedzelski, he is great and now waiting for consult with Dr. Schwartz.

Love to hear from you.

Vivian
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mk on March 13, 2009, 12:15:58 pm
Vivian hi again  ;)

I noticed you will be seeing Dr. Schwartz. He is great, I consulted with him too (about GK). He does both surgery and GK, and has published on the procedure. So he will be able to give you a good perspective on both. I am sure you will have a very constructive consult.

Marianna
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: LisaP on March 16, 2009, 05:28:23 pm
Pearlly,

You are the best, you know that, there for everyone.  Oh by the way my one year anniversary of my dx is March 31st and one year of not smoking on April 4th sooooo my good friend Kim is treating me to yes Pearl OPENING DAY OF THE RED SOX, on April 6th. 

I will be thinking of you and see you soon at our Luncheon!!!

LisaP ;D
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Patsy1960 on April 03, 2009, 07:23:12 am
Hi,
I am a newbie not yet sure i have AN but after last night pretty convinced I do. May i ask what your symptoms were and how soon after they started when you got a diagnoses.  I only have tinnitus in my left ear for two weeks now. My Doctor cleaned out a huge plug of impacted wax in that ear that seemed to help but tinnitus came back next day and hasnt stopped since.  So now i am worried.  I didnt like the ENT he sent me to so wonder how long i can wait before seeing another. I have slightly elevated BP i am on low dose meds for so nto sure if that is contributing to it.  I just really scared. Last night we went to an activity at my childs school and the acoustics in the gym with all the noise made the tinitus worse.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: GRACE1 on April 14, 2009, 07:27:38 am
Don't freak out.  A lot of people have tinnitus that don't have an AN - my husband, for one.

I would think you need to get your hearing tested first.  That is how I found out about my AN.

Keep us posted.

Good luck with your hearing test.

Grace
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: helene1948 on April 14, 2009, 06:07:15 pm
Has anyone on this site had proton beam radiation for their AN......has anyone had recurring headaches and what did they do about the headaches?


Helene in Ohio
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Alice Rapunzel on April 15, 2009, 01:16:13 pm
I just found this website and forum today. I am 18 months post surgery from a 16 hour (planned 8 hour) facial nerve neurofibroma. I have both literally and figuratively stumbled through my recovery due to a lack of information. No one has ever mentioned to me that in a horseshoes and handgrenades sort of way that an acoustic nerve tumor is similar. While the surgeons were excellent the impression I had, and seemed reinforced in my dealings with them post surgery, was that I'd be up and around good as new in a few days -- a week at most.

The emotion I'm feeling just now to have found others of my kind, so to speak, it overwhelmed.

I'd love the opportunity to talk directly with someone.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Cheryl R on April 15, 2009, 03:03:13 pm
Hello and very good you found this site but too bad wasn't earlier.       With your surgery ,was your facial nerve severed or just badly damaged?        There are some types of surgery to help your paralysis if the nerve was severed.         I had a facial neuroma and surgery 3 yrs ago but we knew ahead it probably was so my surgeon took some nerve from by my ear and grafted in at the time of surgery as my nerve was severed and improved me but am not perfect by any means.                        My recovery was pretty much like normal AN surgery.                            I have had tumors on both sides so am NF2 and have had 2 regular ANs removed also.              The facial type isn't real common but does happen.                     I go to Univ of Iowa for treatment.           
   Feel free to talk here and ask any questions you can think of.         I wish you well!
                                                         Cheryl R
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Alice Rapunzel on April 15, 2009, 06:37:30 pm
I'm still feeling pretty emotional. Relief, I guess. But wanted to thank you for your quick response, and after all you've been through yourself.

I'd like to believe I would have done better if I had had any clue that there would be things related to the surgery (dizziness, imbalance, loss of blink reflex, severe dry eye, etc), and especially that there was even the potential for these things to be lasting this long. A direct result of the length of the surgery was nerve damage at my elbow and neck (double crush) which has resolved to livable levels.

I consider myself a fairly bright person, but didn't connect the dots between eyelid closure (which gold weight and lower lid surgeries resloved nicely) and lack of blink reflex and chronic dry eye stuff. I feel pretty stupid that it took until last winter for me to research and find ways to manage it better than simply putting in drops. I had really great surgeons, including oculoplastics, but I not surprisingly (I understand now) they were strictly and narrowly focused on the surgical procedure only.

Background on my tumor. I'd had a crooked smile since I was about 3 years old. Through the decades, my pirate smile as a long ago boyfriend put it, had been oft and repeatedly remarked upon by physicians as either a return episode of Bell's Palsy or residual from it.

Prior to surgery, a CT showed a mass in the middle ear, confirmed with MRI to be a facial nerve tumor, most likely a schwannoma. The facial nerve had to be resected at both ends -- brain stem and parotid gland. Even though I already had a House-Brackmen score of 5, there was still some muscle response on the EMG so a nerve graft was done using the greater auricular nerve.

I am so surprised how hard this is for me to write about! I'm usually quite chatty and have no problem talking objectively about this. I'll come back in another post and fill in.


Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Kaybo on April 15, 2009, 07:18:30 pm
I sent you a PM if you want to chat...

K
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mlouise073 on May 08, 2009, 07:36:22 am
Thanks!  I am going to call for that list...MRI today or tomorrow to confirm Drs. suspicians of regrowth...here I go again after one sugery already...I just want to cry! Mary
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on May 08, 2009, 09:43:07 am
Hi Mary and welcome.  Please hang in there and keep up posted, ok?


I know the ANA has updated the WTT list which now outlines those that volunteer time/good ears/energy and the type of treatments (or if still in W&W).  For those researching treatment options, the list contains many different treatment options so you can speak to those that had treatment done that may be of interest to you.

Hope this helps.
Phyl
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on May 08, 2009, 11:51:48 am
Mary -

Like Phyl said, the ANA just updated their WTT list recently.

I thought it was a great idea that they asked those of us on it whether we had surgery or radiation, had a TransEar or BAHA, were watch & wait, etc.  The list also tells you how long ago someone had treatment, which IMO is very helpful. 

The list contains physical as well as email addresses plus phone numbers, so you can reach those on it in whatever manner is most comfortable for you.

The ANA will also send you their brochures that tell all about ANs and your treatment options - all you have to do is ask them.  I found the brochures extremely helpful and written in very basic language that was easy to understand; not medical-speak.

Jan



Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Tami on December 04, 2009, 12:24:46 pm
I am new, I have a 2cm AN, I lve in Kansas, does anyone know of Dr. Thomas Kryzer?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on December 04, 2009, 02:55:18 pm
Tami -

I searched on Dr. Kryzer and found this old thread by addictedtohorses

http://anausa.org/forum/index.php?topic=2439.0

It looks like she had her surgery with Dr. Kryzer and although she hasn't posted recently, if you PM her she might respond and give you her experience.

Good luck,

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Schadee on December 26, 2009, 06:04:35 am
This is my first post--here goes: Diagnosed with left AN 1.3cm in Oct. Just had RS surgery 2 weeks ago. I now appear to be deaf in the left ear but still have plenty of tinnitus. I'm a little wobbly and dizzy still too. I was so grateful after the surgery and nausea was over that nothing seemed to matter...maybe now it does. At night I feel trapped inside my head, especially if I lay on the right side. It's hard to sleep. I usually get up at 3:30am. Does it get better?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Kaybo on December 26, 2009, 10:24:56 am
Diane~
I am not officially on the WTT list but I would be happy to talk with you anytime - send me a PM (on left) with your number & a good time to call if you'd like...

K  ;D
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: LisaP on January 31, 2010, 11:42:56 am
Hi All,

I have just been added to the Willing to Talk List and I am also trying to organize a support group for the Greater part of Western Mass

thanks

LisaP
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on February 01, 2010, 06:54:31 am
Great news, LisaP.

I'm on the WTT list too!

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on February 01, 2010, 07:19:02 am
Hi All,

I have just been added to the Willing to Talk List and I am also trying to organize a support group for the Greater part of Western Mass

thanks

LisaP

Lisa,
Congrats for being added to the WTT list! Now, there are a few of us from MA on the list (myself as well)  and tickled you are now one of them!  What an asset to the ANA to have you volunteer your time and energy and for stepping up to organize the W. MA ANA Support group! I KNOW you are going to do a FANTASTIC job and major kudos to you! :)  

Well done! :)
Phyl
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Turnip on April 29, 2010, 10:03:06 am
 My name is turnip,

I am a newbie who lives in AR. Am a 63 old male recently diagnose with AN. Size of tumor is 1.5cm x 1.2cm x 1.2cm left side. I am experiencing quite a bit of balance issues, numbness in my lower lip, some facial nerve numbness on left side. Tongue feeling weird as is my taste. Guess many others have had some symptoms, some people not it seems. This all started most recently in last 2 weeks.
Neurosurgeon will not do surgery until June as he seems to have very busy surgery schedule.

This has sure been overwhelming but am better at accepting this all I think. Is truly about one day at a time isn't it?

 I have been on line and have read alot of info from everyone who has had surgery, has been very helpful. Thanks for being so honest and upfront. It helps us newbies and our spouses in understanding what is pre and post surgery.

I have gone for consult with neurosurgeon Dr. Ali Khrisht in Little Rock, AR.  He is currently with St. Vincent Hospital, was with UAMS in Little Rock prior.

Question, is there anyone on line who had surgery or info on surgeon by name of Dr. Ali Krisht in Little Rock, AR? Just wanting to know reputation, how surgery went, credentials,reputation? Wanting feedback if possible please.

Appreciate any info anyone can provide please.

Also,  Need info form those who have Tricare insurance please.

Thanks alot,

Turnip
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lori67 on April 29, 2010, 11:38:20 am
Hi Turnip and welcome.

I don't have any info on your doctor or the hospital, but I do have Tricare insurance.  Actually, if you go under the "Insurance" topic here, there's a thread or two about Tricare.

I had Tricare Prime when I had my surgery.  We were stationed in Nashville, TN at the time, so I used civilian doctors and hospitals and everything was covered 100% with the exception of my neurosurgeon, who was out of network.  I could have used a different neurosurgeon, but this guy was the one my neurotologist usually teams with and I felt more comfortable using him.  Even so, I only had to pay the $1000 catastropic co-pay, which is a bargain for brain surgery if you ask me!   :D

I have Tricare Standard now, which I believe is what retirees have (not sure).  There is a percentage that I pay for each doctor visit and it also has a $1000 catastrophic co-pay, so the most I'd have to pay out of pocket is the $1000.  I'm guessing that as long as your doctors are considered  in network, that would be the same for you.

Hopefully someone will chime in with info on your doctor.

Good luck!
Lori
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Turnip on April 29, 2010, 11:51:46 am
Hi, thanks for email.

DId U have Tricare Prime or Standard when U had surgery?

We have Prime.

Yes, have gone on to the insurance website. Is where I saw WETBE's info on Tricare also..

Thought we only had to pay the co-pay with the hospital?  I need to call also. Hard when they don't have the codes yet and our date with surgeon is TBD..June sometime. We meet with neurosurgeon on May 19th.


Thanks alot..

Turnip
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: lori67 on April 29, 2010, 01:37:59 pm
With Prime, you shouldn't have to pay anyone, as long as they're in network.

The doctor's office should have an insurance person who will do all the work of figuring out what's covered and what's not, so don't drive yourself crazy over it.  I know I've never had to worry about it - I just had to show up when they told me to and they took care of all the paperwork.

Just out of curiousity, have you looked into to radiation at all?  Sounds like that might be a good option for you also, considering the size of your AN. 

Lori
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Turnip on April 29, 2010, 07:02:54 pm
Hi Lori,

Yes we are kinda looking into Linac.. Surgeon said that because tumor is pressing on brainstem and radiation may not get it all. We are going to ask May 19..

Do U know anyone who has had Linac radiosurgery?

Thanks,
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on April 29, 2010, 08:07:22 pm
Hi, Turnip.  Welcome to the Forum.

If you search on LINAC (search box is located on the upper left side of your screen under your user info) you'll find several threads on LINAC.

Jan
Title: My experience - willing to talkjavascript:void(0);
Post by: Shan1014 on June 29, 2010, 07:22:21 pm
I have posted a diary of my experiences with AN.  I am post surgery almost 4 months from a massive 4 cm growth.  Ask any questions you would like.
Here is the site.  mymediabandit.com/
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: tsr on July 16, 2010, 08:38:30 am
i had a 1.5 cm AN surgically resected in 2003 (middle fossa) and it has regrown to 10mm. i am now considering cyberknife treatment. how do i find out which CK centers have performed the most treatments on AN's, especially post op AN's, and which centers are the best and most experienced with AN's in general? thanks for any insight you can share.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Mickey on July 16, 2010, 09:07:21 am
Iv`e spoke to alot of great people here and am on the WTT list. Will be happy to talk! Mickey
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mysticfem on August 27, 2010, 08:20:51 pm
    Hello Ana,
       I'm interested in researching endoscopic surgery and have just read a message from ixta who had had this and is on your WTT list. How do I access this list? :)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on August 27, 2010, 08:28:08 pm
Contact the ANA directly - by phone or through the main page of this website - and ask for the WTT list.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: jbenn on September 14, 2010, 09:29:59 am
Thank you for the info.  I will call them to day also.  I would really like to "talk" with as many as possible re. Dr.Tamargo and Dr. Niparko at Johns Hopkins and find out about their experiences.  Do you think they would know who those people might be if there are several?  Thanks. 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on September 14, 2010, 04:57:14 pm
The WTT list doesn't list the name of the doctor(s) who treated the AN patient.

But it shows the patient's name and contact info (email and phone) plus what type of treatment they had (surgery, radiation).  If you find someone "local" to you, they may have had their treatment local. 

My information on the list also shows that I have a BP100 (BAHA).

If you'd like to talk to patients of Drs. Tamargo & Niparko, I'd ask them if they have any patients you can contact.  Some doctors are willing to share this information with their new patients - if their "old patients" aren't opposed to it.  My doc knows I'm more than willing to talk to patients, so he's mentioned to a few that they can find me through this Forum.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: kaitysmom on October 25, 2010, 11:11:17 am
I'm a patient of Dr. Tamargo.  Although I haven't had my surgery yet.  I'd like to hear from folks who had their surgery by him as well. 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on October 26, 2010, 04:34:45 pm
As I mentioned in my previous post, the WTT list doesn't give the name of the doctor(s) who treated each person on the list.

If you want to find others on the Forum who had surgery with Dr. Tamargo, search on "Tamargo" - using the search box in the upper lefthand corner of your screen under "User Info".

There should be several posts by patients of Dr. Tamargo's.

Good luck,

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Chris P on February 22, 2011, 10:40:56 am
Phyl,

   I want to say you are right about the WTT list.  I also got a packet and it had so much information .  It helped me a lot.  I joined the association recently and enjoy the support.  I do find it is hard to connect with someone with my experience.  I had  Gamma Knife Radiation in June 2010 on a small tumor in my right ear, and four months later got facial weakness.  I am still dealing with that along with loss of hearing and loud sounds in my right ear.  The facial weakness has improved in small amounts but is still not good.  I do not drive because my right eye does not close all the way and it tears and distorts my vision.  My balance is not all that good either but some days it is better than others. 
   I just try and keep a positive attitude and take it one day at a time.  My doctor tells me it is a slow process and he wants to see me in June for a follow up MRI.  I had my GK at Shands in Gainsville Florida.  It all went well and as far as the doctor can tell the tumor is dying in the center , he feels all is going along as it should. 
   I hope you continue to have good reports .  Thank you for your information.

Chris P
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Pruneface on March 28, 2011, 06:13:55 pm
Is a two-or-three-month wait time between diagnosis and surgery acceptable?  I'm a teacher and would liike to wait until June to have my surgery for a 3.5 cm tumor.  Doc says that's okay.  How long have you waited, folks?
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Kaybo on March 28, 2011, 07:00:51 pm
Hi Pruneface and welcome!
I was a teacher too & I grew up with teachers for parents so I totally understand about wanting to wait until summer!!  3.5 seems a bit on the large size but if your doctor says it is OK to wait, then I guess it is OK.  Will you tell us a bit more about you?  What area are you located in?

K   ;D
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mandy721 on April 02, 2011, 12:24:58 pm
Pruneface,

My husband's tumor was a bit smaller than yours and he had surgery 2 months after diagnosis.  His doctors told him that it needed to come out within a few months, but that it wasn't an emergency.  I agrees with Kaybo, if your doctors think it is ok, go with their recommendation.

Miranda
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on April 02, 2011, 01:11:30 pm
Prune -

ANs are typically very slow growing so you shouldn't have any problem waiting 2-3 months for treatment.  Some patients watch & wait for years, in fact.  If your doctor was concerned with you waiting, I'm sure he would have told you.

I had my surgery 6 weeks after diagnosis.  I was diagnosed in mid-April and had the surgery at the end of May.  I purposely scheduled the surgery that quickly because I wanted to be on a plane in early August and my doc has rules about how long you need to wait before you can fly (not all docs have the same rules).

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Twindad on June 19, 2011, 08:03:44 am
Thanks for the info. I must make that call in the morning. Getting so stressed out with this upcoming surgery ! Just want it over with to rid myself of these severe headaches. Who knows, maybe I'll meet a grumpy nurse or two in the process.  :P
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ckoza1 on July 20, 2011, 03:00:01 pm
Thank you so much, Phyl, for posting this and being there for us. I am newly diagnosed as of July 7 and am pretty scared of it all. This is giving me something to hang onto, and I am most grateful for all of the support and information I have recieved in a very short time. I have joined the ANA and am looking forward to recieving their information package.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Chances3 on October 06, 2011, 11:00:51 am
This site was a lifeline to me when I was in the valley.  No one but AN people know what you are feeling.  Excellent advice was given to me when I asked and replies of encouragement when I needed to vent.  I am in contact with my local chapter, and I hope to make a meeting next month.  Everyone is wonderful here, I feel like we have been friends for a life time.

God Bless you all.

P.S. - and the spell check works real well, ha-ha.....
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Mei Mei on November 09, 2011, 09:36:42 pm
Dear PPearl and  Nancy
I am new to the Willing to Talk list but your comments bring up some concerns that I have been thinking about.   I think that definitely there should be more screening and "TRAINING" involved in the WTT list so that what happened to Nance doesn't happen again.  We are all different patients not cut from a mold.   The privildge of being on the WTT list does not put you in a place to vent your own problems.   We have to listen with open ears.

Mei Mei
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ppearl214 on November 10, 2011, 05:26:39 am
Hi MeiMei and agreed.  The goal of the WTT list to offer volunteer patients who are willing to open up good ears in an unbiased way and to share our own personal experience.  Many do not log onto the forums so it is a way for us to be there for those that may be newly diagnosed or going through the processes..... to share what we have learned via our own AN journey but the key, as noted to us on the WTT list by the ANA, in an unbiased way.  The ANA clearly notes this when we join the WTT list and I have not run into any discussions with those that phone me (I receive, on avg, approx 3-5 phone calls per month that last approx 30-60 mins) that have noted biases or "venting" when they have spoken to others on the WTT list prior to phoning me.

I, personally, have never "vented" during a WTT phone call as that is not the arena to "vent" any frustrations I may have in my AN journey.  My/our role on the WTT is to be there for someone else as you noted.

Not sure if that helps... it's early right now.  Thank you for being on the WTT List... and all you do here! :)
Phyl

Dear PPearl and  Nancy
I am new to the Willing to Talk list but your comments bring up some concerns that I have been thinking about.   I think that definitely there should be more screening and "TRAINING" involved in the WTT list so that what happened to Nance doesn't happen again.  We are all different patients not cut from a mold.   The privildge of being on the WTT list does not put you in a place to vent your own problems.   We have to listen with open ears.

Mei Mei
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: wendymenard on June 16, 2012, 01:46:24 pm
I will be on that list soon too if not already...I think talking with each other is a great form of therapy. We all need to lean on each other  :)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: robinb on January 24, 2013, 08:05:04 pm
I would be happy to be on the WTT list as I had GK this morning and feel great.

Would whoever maintains this please contact me.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: leapyrtwins on January 28, 2013, 02:22:26 pm
Robin -

you should contact the ANA directly.  Their staff doesn't regularly access the Forum - and when they do it's doubtful they read all the posts; just too many.

Jan
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: robinb on January 28, 2013, 02:36:36 pm
OK, will do. Thanks!
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: elw101699 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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: terisandler 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.   :)
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: mandy721 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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Ned on April 28, 2014, 12:37:27 pm
Be glad to talk with anyone, just pm me.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: KeepSmiling 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.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: ANA Forum Admin 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 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: caryawilson 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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: John Siwecky 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.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Cityview 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.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Abetpds 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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: AL-Tcw 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. 
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: juliacummins 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
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Hitylo on December 07, 2018, 08:24:07 am
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 (http://"https://tirereviews.co/")


  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.
Title: Re: ANA WTT (Willing-to-Talk) List available to newbies
Post by: Eardrops on April 25, 2020, 09:18:44 pm
Thank you.  Very kind of you to offer your time.