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Author Topic: What an Amazing Support Site  (Read 4721 times)

Kathleen5306

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What an Amazing Support Site
« on: July 02, 2008, 05:49:36 pm »
I think this is obivous to most, but I wanted to take the time to acknowledge what an incredible support this site is to me as I evaluate my options to deal with my AN.  The last few weeks have been rough, but the hours I have spent on this site searching, researching and learning have been the best thing since being told that I need a second treatment for my AN.  I don't want to take for granted the difference this is making in my process.  Thanks to all who have built this into an amazing web of support.

Kathleen
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Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

leapyrtwins

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Re: What an Amazing Support Site
« Reply #1 on: July 02, 2008, 06:00:59 pm »
Kathleen -

this truly is an amazing support site - as well as an incredible resource for AN patients, family members, friends, etc..  Personally it's been a Godsend for me, which is one of the reasons I stick around here, even though I'm now 13 months post op.

I didn't find this site until after my retrosigmoid surgery, but I've always wished I had found it sooner.  There's just something about being able to connect with others who totally understand what you are going through.

IMO one of the best things we can do is mention this forum, and the ANA in general, to the healthcare professionals we come into contact with.  I firmly believe that everyone who is diagnosed with an AN can find something of interest here.

Jan
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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

Kathleen5306

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Re: What an Amazing Support Site
« Reply #2 on: July 02, 2008, 06:56:22 pm »
Jan

I did not find this site with my first course of treatment which was in October 2002.  I'm not sure if it would have changed my decision, but it certainly would have changed my attitude of not feeling so alone.  As I am going through this for round 2, this site has been the saving grace.  When I was first told I was in the exclusive club of the 1% that had failed CyberKnife, my reaction was "WHY ME!!!"  Now my reaction is "Why not me, I can get through this."  I will spread the word in my circles, with my medical contacts and with anyone who might benefit from it.  I am grateful it is here and do not want anyone to think their thoughts and contributions don't make a difference.  They really do.

Kathleen
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Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

calimama

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Re: What an Amazing Support Site
« Reply #3 on: July 02, 2008, 08:19:45 pm »
Having just been through diagnosis, reasearch and surgery, i have to say ditto and also a big thank you.
This site has been the best thing about the whole diagnosis. It is such a big thing to get answers and support!

Thanks all.....

Trish
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Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

wendysig

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Re: What an Amazing Support Site
« Reply #4 on: July 02, 2008, 08:50:55 pm »
Kathleen,
Welcome to this forum.  I am so sorry to hear that you have to deal with an AN for the second time, especially in such a short time period.  You are right, this site is a wonderful source of information and support.  I was fortunate to find this site the day after I got my diagnosis back in April.  Although I have not yet been treated for my AN, I am scheduled for surgery later this month.  I have to agree with Jan that this site is a Godsend.  I am sure I would not be as psycologically prepared or have the positive attiitude I have were it not for the support I have received here.  We are all  happy to support each other and newcomers to our AN family in whatever way we can.  Please feel free to ask any and all questions and vent when you need to,  That's what wer're here for.

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

sgerrard

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Re: What an Amazing Support Site
« Reply #5 on: July 02, 2008, 08:57:59 pm »
Quote from: Kathleen5306 on July 02, 2008, 06:56:22 pm
When I was first told ... my reaction was "WHY ME!!!" 
Now my reaction is "Why not me, I can get through this." 

Very nicely said, Kathleen. It comes pretty close to being a motto for the ANA forum.

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

oHIo

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Re: What an Amazing Support Site
« Reply #6 on: July 02, 2008, 09:17:35 pm »
Quote from: Kathleen5306 on July 02, 2008, 06:56:22 pm
my reaction was "WHY ME!!!"  Now my reaction is "Why not me, I can get through this."  I will spread the word in my circles, with my medical contacts and with anyone who might benefit from it.  I am grateful it is here and do not want anyone to think their thoughts and contributions don't make a difference.  They really do.
Kathleen

Kathleen...with that kind of attitude, you WILL get through this.  We are here to support you through every part of this process.  I have found great support here, even when I don't post.  If I am having a bad day, I lurk and usually find something to lift my spirits. 

If you look through some of the posts, you will discover some of our members have a wicked sense of humor and some potentially undiscovered talents.  Just ask Steve to knit you a hat  ;)

Welcome to the forum.  It truly is a great group here. 
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lori67

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Re: What an Amazing Support Site
« Reply #7 on: July 02, 2008, 10:03:16 pm »
Kathleen -

I'm so glad you found this site too.  I didn't find it until after my translab, but it has gotten me through the rough times and I'm sure it will continue to do so.  There's strength in numbers - and I'd say we're pretty strong around here - no matter how rare we are told we are!   :D

I think we should see one of Steve's hats first before we decide if he's truly talented though.  For all we know, his hats may look more like knit socks!   :D

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

wendysig

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Re: What an Amazing Support Site
« Reply #8 on: July 03, 2008, 06:36:36 am »
Hi Steve,
By the way, I was hoping for my hat before I went on vacation.  Guess I'm out of luck!  See you all in two weeks!

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Debbi

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Re: What an Amazing Support Site
« Reply #9 on: July 03, 2008, 08:31:01 am »
Nice to meet you, Kathleen.  And, I agree with you that this site is a Godsend.  I felt so well prepared for surgery, and it is all becaues of the people on this forum and their willingness to share their experiences.  I was also well prepared for complications, so my recovery, while not exaclty smooth, has gone very well.  Knowing that you arent' all alone is such a comfort.  Glad you are here!

Wendy - silly goose - you won't need a knit hat in FL anyway...  But let's start pressuring Steve now because fall in the northeast is just around the corner!

Debbi, grateful for all my forum friends
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Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jim Scott

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Re: What an Amazing Support Site
« Reply #10 on: July 03, 2008, 08:46:34 am »
Kathleen:

Thanks for the kind words of appreciation for the website and the forums.  I wholeheartedly agree, of course, and I'm proud to be a part of this 'select' group, right along with you.  Your positive, affirmative attitude will be of great benefit to you in the weeks to come as you make those difficult but necessary treatment decisions.  Just know that we'll be here to support you all the way.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sammict

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Re: What an Amazing Support Site
« Reply #11 on: July 03, 2008, 09:07:47 am »
Hi Kathleen

  I am sorry to hear your AN is back. I agree with you this site is an incredible site the people are supportive. I found this site two weeks after my diagnosis. My doctor told me the best therapy was to do my reasearch and give lots of thought to all my options.
  There is alot of information out there but what I found to be the best was this forum. reading actual testimonies and talking to everyone has eased my mind as I get closer to having my surgery. I'm glad you found it.

Sam



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Kaybo

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Re: What an Amazing Support Site
« Reply #12 on: July 03, 2008, 09:27:45 am »
Kathleen~
This is a wonderful group of caring, supportive people - I wish it would've been around when I had surgery - heck, I wish the internet would have been around more!!  ;D  Seriously, I fumbled around for 12 years until I found others that TRULY knew what I had been through - not that I ever let it get to me - I didn't know what I was missing and had a super support group (& hubby), but it is different to have those that have "been there"!!  Be glad you can have this!

K
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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!

yardtick

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Re: What an Amazing Support Site
« Reply #13 on: July 03, 2008, 09:57:03 am »
Yes this is an amazing site.  It's my 1 year anniversary on this site!!! ;)

Lots of information, support and laughs.

Thanks my fellow forumites,
Anne Marie
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

wendysig

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Re: What an Amazing Support Site
« Reply #14 on: July 03, 2008, 12:31:48 pm »
Hi Sam,
I haven't seen any posts from you recently and wanted to say "Hi!"  I looked to see if your surgery is on the calendar.but it is scheduled for this month, you didn't post it.  If you have surgery before I get back from vacation (on or about 7/17) I wanted to wish you good luck.  Good luck to to Coffeelady and anyone else I missed

Jim -- Good luck with your second MRI on t he  18th.  I hope you get only good news!

I just had a few minutes to check things out i-- took a short break from finishing packing.  To everyone else, I wish you good health, good news and better days.  See you in two weeks.

Kathleen - Sorry for hijacking your thread - hop you don't mind.

Best wishes,

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!
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