Author Topic: Thanks...  (Read 3476 times)

GM

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Thanks...
« on: August 13, 2008, 07:44:24 pm »
I wanted to say thanks to all of you who post regularly.  One of the biggest problems for us AN’ers is that the many of those who had successful procedures have ventured off…well away from places like this that are so important to those who are new.

The new people want so desperately to find out information while they try to make such an important decision…and most of those that have really good data have ventured off into living their own lives. 

You have stayed…making time for those who are new…sharing your experiences both good and bad.  Working, healing, providing encouragement, while sometimes really in need of it yourself…I thank you for all those that are new and are lurking in the sidelines trying to figure all of this out.
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

ppearl214

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Re: Thanks...
« Reply #1 on: August 14, 2008, 05:36:38 am »
I have no life... thus... I remain here!  :D


What a lovely thread, GM! Thanks for sharing this... and you KNOW I send continued wellness wishes to you!!!!!!!!!!

*runs off to find newbies here to see if I can help*

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

Debbi

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Re: Thanks...
« Reply #2 on: August 14, 2008, 07:55:22 am »
Great thread, GM.  I decided early in my adventure that if I survived it, I would hang around and hopefully be able to return the huge gifts that I got through this forum.  I sure don't have all the answers, but I do know what it feels like to feel lost, overwhelmed, terrified, and undecided - and I know how great it was for me to have the support of the people on this forum.  I hope to be around a long time and to be able to provide some measure of comfort for others who find themselves on this path.

Debbi
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

Kaybo

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Re: Thanks...
« Reply #3 on: August 14, 2008, 08:08:36 am »
GM~
I had surgery so long ago and there was NOTHING like this for me.  I want so much to be able to help & encourage others on the path that I had to travel alone.  However, it has been wonderful for me too.  Not only do I have the sense that I am helping others in some way, but many of the feelings I have had over the years have been validated!

Thanks to YOU for taking the time to recognize this - there are soo many wonderful and dedicated people here!   ;D

K
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!

Mark H

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Re: Thanks...
« Reply #4 on: August 14, 2008, 08:58:43 am »
I'm more of a lurker than a poster. I mostly hang out at the NF boards but I read here. Hey, I don't have a life either. :P  My AN's remain tiny, about 2 mm each as of last year's MRI and I might not even bother with getting one this year. I have gone through about $30,000 in medical bills this year though. I've now got a titanium rod, 4 screws, and a chunck of dead person bone in my neck. Not NF related, just one of them things. I do like reading about everyone's experiences and have gathered a lot of 'just in case' info here.  ;D
Mark

Jim Scott

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Re: Thanks...
« Reply #5 on: August 14, 2008, 09:05:33 am »
GM:

Allow me to add my appreciation for your recognition of those who are long-time habitué of these forums.  Your point is well taken and frankly, seeing another AN patient post a message that informs us of their gratitude for whatever was learned here that benefited that person in their 'AN journey' is more than enough reward.  That you took the time to post your personal recognition is doubly rewarding, and I thank you.  :)

Jim
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.

Maverell

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Re: Thanks...
« Reply #6 on: August 14, 2008, 10:37:59 am »
Stay in there GM. Being a newcomer to this forum as I am,  I can see the great benefit this forum can have for new AN patients. Take care.

Captain Deb

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Re: Thanks...
« Reply #7 on: August 14, 2008, 04:11:15 pm »
I'm here for the headache sufferers who don't know what the heck to do.  It took me 3 years to figure out that I needed the right meds,  a super-specialist, and a pain manager and 5 years to get disability benefits.  No one should have to go through that. If I stay on this forum for the next guy or girl who comes along in that same situation, maybe he or she won't have to. Maybe what I went through won't have been for nothing.

I'm also part of the comedy writing team.

Hugs and big smooches to all the newbies and old-timers!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

mimoore

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Re: Thanks...
« Reply #8 on: August 14, 2008, 05:50:23 pm »
I am truly grateful for all of the wonderful support I have found here. I had felt so alone then I met others who have/are experiencing the same thing.
I feel blessed that I do not have to take this journey by myself. {{{{{Big cyber Hug}}}}}}}
Thank you new friends.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Palace

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Re: Thanks...
« Reply #9 on: August 14, 2008, 08:01:51 pm »
GM,


I'm still around however, I'm leaving for a couple of days now.  It will be my first "get-away" since my medical issues.  Many people are watching and do extend support or information when they are able to contribute/help.

It is nice that you wrote in appreciation.

My next MRI is in November!



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Kathleen5306

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Re: Thanks...
« Reply #10 on: August 15, 2008, 04:02:46 am »
GM

I feel an enormous debt of gratitude to this Forum.   As I thought though my options for my second round of treatment for my Acoustic Neuroma, the support I received here changed my life for the positive.  I am two weeks post-surgery.  Doing great and recovering nicely.  I am compelled to find ways to give back to this community that gave so much to me.  Even if it is just quick notes of support, words of encouragement, or testimonials that life is good after surgery, I hope to be a long term supporter of this incredible forum.

All the best to you as you find your way,

Kathleen
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

lori67

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Re: Thanks...
« Reply #11 on: August 15, 2008, 07:05:44 am »
Well, like Phyl, I have no life either.  So, here I am.   ;D

And - oh my goodness - Jim is now using big words in foreign languages!   :o


GM:

Allow me to add my appreciation for your recognition of those who are long-time habitué of these forums. 
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.

MAlegant

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Re: Thanks...
« Reply #12 on: August 15, 2008, 07:33:30 am »
If not for this forum, the past month or so would have been unbearable.  To have unconditional support and caring from such a fine group of people is enough to make me want to give back again and again. 

Mon Dieu Jim, je pense que vous etes etonnant!  Sorry I can't figure out how to put the accents in...

Grace a tous.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

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Re: Thanks...
« Reply #13 on: August 15, 2008, 09:31:15 am »

Mon Dieu Jim, je pense que vous etes etonnant!  Sorry I can't figure out how to put the accents in...

Grace a tous.
Marci

My French is pretty rusty (I'm good for using one word at a time, at best) but I think you're amazing too, Marci, as are many of our fellow ANers.  Your thanks is humbly accepted by all, I'm sure. 

Jim
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.

yardtick

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Re: Thanks...
« Reply #14 on: August 15, 2008, 09:49:04 am »
I'm here for the long hall.  I'm one of the the lucky one who suffers from debilitating headaches.  If it wasn't for this forum I would have lost my sanity.  The forum is very informative.  I believe we as a group know more than the medical community.  I love the bantering and the humour.  Under my picture it says "I have to keep smiling or else I WILL CRY..." 

Thank you everyone,
Anne Marie
« Last Edit: August 15, 2008, 09:51:10 am by yardtick »
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games