Author Topic: Message from the ANA Membership Committee  (Read 26494 times)

ANA

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Message from the ANA Membership Committee
« on: August 10, 2011, 08:46:26 am »
As an occasional, frequent, or everyday participant on the Forum, you know the value of this service to you and to the thousands of other acoustic neuroma patients who seek help from other members on the Forum.

Since we initiated our new site in 2005 the forum has had close to 167,000 posts, on close to 13,000 topics by over 5,000 Forum members.  You clearly believe in the importance of the Forum; we hope you believe that the Forum and the many other services available to the public and AN patients deserve your membership support.

If you are not a current member of ANA, we urge you to click on our Join/Renew link on our home page to become a member of an organization that you have relied on as an excellent source of information as you deal with your acoustic neuroma.

We would love to welcome you as a member of ANA.
« Last Edit: September 21, 2011, 09:52:43 am by ANA »

ppearl214

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Re: Message from the ANA Membership Committee
« Reply #1 on: September 15, 2011, 03:47:06 am »
As one that has been a member for a number of years..... this original post focuses on the value of the forums.... which, I, for 1, have to admit, helped to bring me wellness after my research when I was first diagnosed. I would also like to add the the membership also brings "Notes", the quarterly newsletter from the ANA, discounted fees to the national symposiums and more.  The ANA publishes info/brochures and most of all, brings patients together through their Willing To Talk list as well as sponsors local support groups.

My wallet hurts like most folks, but for what the ANA has done... and continues to do.... I also encourage others, if feasible, to join the ANA as they do sooooo much for us in our time when we need our support and information.... and the kinships that have grown all due to the ANA.

Honestly, if it wasn't for them, I wouldn't be doing as well as I am doing due to their initial info they sent me and these forums.  I've noted it before.... I've noted it to them verbally and in writing... and I note it again here.

I hope you all will also consider the membership so they can continue to do for us all that they do.

Just my 2 cents.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: Message from the ANA Membership Committee
« Reply #2 on: September 15, 2011, 06:49:57 am »
I have to ditto everything Phyl has written!!!!!

In my darkest moments, the people on this forum have been my lifeline.  Unless you have "walked in our shoes," no one can fully understand the challenges we face.

I hope everyone notices the lack of annoying ads on this forum and ANA web site.  This would not be possible without the support of memberships and "angels" or friends of the organization.  As with other worthwhile organizations, any amount of support an individual can give is valuable.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

skipg

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Re: Message from the ANA Membership Committee
« Reply #3 on: September 15, 2011, 12:33:09 pm »
I firmly believe in giving back when I have been helped. ANA has been a tremendous support and invaluable source of information. I was lost in the months before I found ANA. This association was there for me when I needed them most. I immediately joined and gave a donation to the cause. My copays for testing were far greater than the yearly membership and support amount I gave. At least the ANA did not stick me with needles, no sound checks on my head via MRI's, and cause me to lose countless hours on Dr visits, overall they were painles and pleasent to deal with. I will be renewing again and donating to a wonderful organization.

Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

ppearl214

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Re: Message from the ANA Membership Committee
« Reply #4 on: September 16, 2011, 08:40:44 am »
I firmly believe in giving back when I have been helped. ANA has been a tremendous support and invaluable source of information. I was lost in the months before I found ANA. This association was there for me when I needed them most. I immediately joined and gave a donation to the cause. My copays for testing were far greater than the yearly membership and support amount I gave. At least the ANA did not stick me with needles, no sound checks on my head via MRI's, and cause me to lose countless hours on Dr visits, overall they were painles and pleasent to deal with. I will be renewing again and donating to a wonderful organization.

Skip

Skip
Aye-men to every word you wrote! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Susan A

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Re: Message from the ANA Membership Committee
« Reply #5 on: September 16, 2011, 05:51:47 pm »
I found the ANA forum between having my MRI done and getting the official diagnosis from my ENT. I signed up as a member very shortly afterward. The cost was the same for me as 2 copays for doctor's visits, and I am sure over the next few months I'm going to get my money's worth! I'm so happy this community is here  :D
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Kaybo

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Re: Message from the ANA Membership Committee
« Reply #6 on: September 16, 2011, 09:40:18 pm »
I didn't get to this site until 12 YEARS after my surgery...and even though I can never keep up with when I should pay my membership dues, I try.  I think of this is a way I can help other people and that is what the ANA is all about.  Even though I don't come here for support, I have made some incredible friendships with others thru this site!

Thank you ANA for all that you do for so many!

K   ;D

PS - Can somebody tell me if I need to send a check??  ::)
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

ppearl214

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Re: Message from the ANA Membership Committee
« Reply #7 on: September 17, 2011, 05:56:14 am »
PS - Can somebody tell me if I need to send a check??  ::)

Just send a check, regardless :) 
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ombrerose4

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Re: Message from the ANA Membership Committee
« Reply #8 on: September 17, 2011, 08:50:55 pm »
Like Jan, I didn't find the ANA until I was post op and I am grateful every day for this organization and what they do for us. Without them and this forum I would have never made it this far. I will give until the day I die!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

bethbertolini

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Re: Message from the ANA Membership Committee
« Reply #9 on: September 20, 2011, 12:01:47 am »
      I have been a creeper on this site since I was diagnosed in August. I'm almost afraid to start a posting because I don't know it I'll be able to shut up. So much to take in. These postings have made me feel like I have people who are like me. I hope I can be like some of those positive people in this forum that have inspired me to have hope for a better life. I know that surgery is going to be one of the roughest roads I've ever been on, but my life has had some ups and downs and so far I've enjoyed the ride. There is no future without surgery so I'm ready to jump right in and see what happens. I have a great family and lots of faith in God. I know there are hundreds of people praying for me already and I am blessed to have good insurance and the ability to travel to some great doctors.
     The uncertainty is hard to take. Everyone seems to have very different difficulties, challenges and results. I know I am in God's hands and that is a great place to be.  Life is such a mystery! :o
     One of my biggest worries is that my family does not understand how rough things might get in the near future. I kind of pretend to be "fine" to those around me and I'm worried that they might be a little shocked immediately after surgery. Who knows? Maybe I'll surprise myself!
     I am looking forward to my trip to LA. Going to enjoy the mountains, beach, a little shopping, and some happy family time before surgery. 
     Thanks to all of you who have made me feel welcome before I even showed up in here.

Beth

diagnosed  Left side 3.6 cm. AN 7/11
surgery scheduled @ HEI 10/20/11 Dr. Wilkinson and Dr. Schwartz
 Now post op and healing. AN turned out a little bigger but what's the difference at 3.6-4cm. Very little.
I think I'm making decent progress

Kaybo

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Re: Message from the ANA Membership Committee
« Reply #10 on: September 20, 2011, 05:48:06 am »
Beth~
Glad that you came "out" & joined us and that you have been able to use this Forum as a positive place.  Sounds like you have everything all worked out...AND it sounds like a good plan to me!  ;)  I, too, was blessed with all that you mentioned, and had/have a VERY strong faith - that put with a good, positive attitude & a dose of humor will take you far in this AN journey (IMO)!
Please feel free to PM if I can help you in any way - I'd even be happy to call & chat!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CHD63

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Re: Message from the ANA Membership Committee
« Reply #11 on: September 20, 2011, 07:33:41 am »
Hi Beth and welcome to this forum .....

So glad you posted.  Yes, you are not only in God's wonderful hands, but you have the most skilled surgeons, as well ..... a great combination.

Just curious, will you and your family be staying in Seton Hall?  My husband and I stayed there when I had my surgery last May ..... just wanted to visualize you if that is where you will be.

Feel free to PM me, as well, if you have any questions/thoughts.

Many, many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

bethbertolini

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Re: Message from the ANA Membership Committee
« Reply #12 on: September 20, 2011, 11:10:15 am »
     Thanks for a quick response, ladies! I have a sister who lives in Van Nuys, CA. She and her husband just bought a house and they have a guest room (with it's own bathroom and a fireplace!) just for me to come home to recover in. My husband and father are going out for the surgery with me. Hubbys got to go back to work 3 days after surgery but my Dad, sister and bro-in-law will be around to help me out for the remainder of my stay in CA. If things are looking grim at first, my husband can take a little more time off. I've heard the first 3 days are tough and I feel bad that's all he'll be around for. I'd rather he have time off when I get back to my own home.
     I checked out both of your profiles and appreciate the personal experiences you both have gone through. I'm sure you will be hearing more from me in the days to come. It feels like they are coming way too quickly right now. I'm on a mission to enjoy as much fun stuff as possible right now. I think that after surgery I'll be working on healing for most of the autumn season. My hope is to be in good enough shape to have a sort of normal Thanksgiving with my family. My dream would be to be in good enough shape to attack the stores on Black Friday! ;) I do realize that's a bit of a stretch, but a girl can dream, right? I am prepared to send my husband and son out to do my usual spree.
     Thanks again for your listening, even if it's only with one ear.

     Beth
Beth

diagnosed  Left side 3.6 cm. AN 7/11
surgery scheduled @ HEI 10/20/11 Dr. Wilkinson and Dr. Schwartz
 Now post op and healing. AN turned out a little bigger but what's the difference at 3.6-4cm. Very little.
I think I'm making decent progress

leapyrtwins

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Re: Message from the ANA Membership Committee
« Reply #13 on: September 20, 2011, 08:12:11 pm »
Beth -

wanted to add my welcome too.  Glad you decided to join us, although I'm certain it wasn't what you intended to do with your life  ;)

Jan

PS - Phyl, apologies all around for the hijacks on this thread  :-*
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Message from the ANA Membership Committee
« Reply #14 on: September 21, 2011, 04:25:26 am »
PS - Phyl, apologies all around for the hijacks on this thread  :-*

Noted :)  I would like to welcome Beth as well and glad she has found us for support. Yet, another reason to support the ANA in their efforts to keep the forums up and running.  With everyone's support, they can help to keep this forum alive for us to help build AN'er relationships when sometimes, others in our lives just don't "get it."  Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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