Author Topic: Five years!  (Read 3652 times)

Sue

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Five years!
« on: March 11, 2011, 07:06:18 pm »
Hard to believe five years have gone by since my diagnosis.  Nothing new to report.   Same old, same old as they say.  I notice a little tinnitus in my good ear, which I posted about.  That is kind of disconcerting.  I have TMJ issues which are not AN related, and that has taken over as a primary health concern for now.  I am doing physical therapy to see if that will help.  But, other than that, the AN is sort of a non-issue for me.   Wish the big T would go away, wish the facial numbness would disappear, and some left sided hearing would be nice...but what are ya gonna do?   Just try to shove it aside and just keep on truckin'.   :P

Thanks to everyone on here and to our top notch moderators for doing such a great job.  Knowledge is power.

Hugs,

Sue in Vancouver, WA USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Brendalu

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Re: Five years!
« Reply #1 on: March 12, 2011, 08:16:29 pm »
Congratulations, Sue!!  It is a hard road to travel sometimes, but this forum helps smooth out the bumps.  Are you sure your TJM isn't AN related?  I didn't have it prior to the surgery, but it is sure there now.  I am doing PT for it too, and I pray that it works.  Seems like if it isn't one thing it is ten! 
I just wanted to say "wooooooooooooooowhoooooooooooooooo" on your fifth Anniversary and thank you for all of your input and help you have given me...you are so appreciated.
Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

nancyann

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Re: Five years!
« Reply #2 on: March 13, 2011, 10:25:13 am »
Hi Sue:  5 YEARS !!!  CONGRATULATIONS !! I remember your many kind words when I was going through the tough parts post op.
I also get tinnitus in my good (only working) ear from time to time. 
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

leapyrtwins

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Re: Five years!
« Reply #3 on: March 13, 2011, 10:49:48 am »
Major congratulations, Sue!   ;D

Five years is a BIG milestone!

Jan
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

Jim Scott

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Re: Five years!
« Reply #4 on: March 13, 2011, 02:13:10 pm »
Sue ~

Please accept my slightly belated congratulations on achieving your 5 year ANniversary.  I'm coming up on my own five-year 'anniversary' (of my diagnosis/surgery) and  I can easily understand your feelings.  Although AN surgery remains a major part of my medical history, as time goes by, other issues slowly move ahead of the AN 'stuff'.  I trust your TMJ issues will eventually be resolved.

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.

jaylogs

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Re: Five years!
« Reply #5 on: March 13, 2011, 03:15:52 pm »
Congrats Sue!!! As you said, just keep un truckin, you'll be doing just fine!!
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ppearl214

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Re: Five years!
« Reply #6 on: March 13, 2011, 04:53:47 pm »
Sue!  :-*  :-*  My radiation-ANniversary twin!  MAJOR congrats to you! My 5-yr is in 2 wks  (as you may remember) and I'm right there with you. Trying to figure out how to celebrate and hoping you are doing something "twuely speshal" to celebrate! One heck of a milestone and can't wait to reach it as well!

Happy ANniversary!!!!!!!!!!

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

Larry

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Re: Five years!
« Reply #7 on: March 13, 2011, 06:50:49 pm »
Sue

Congrats to ya.

I reckon it must have been the Tim Tams and the secret rendezvous with Mathew!!!!


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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Sue

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Re: Five years!
« Reply #8 on: March 14, 2011, 10:12:57 am »
Thanks , everyone, for all your kind words.   It's been a lifesaver to have all you guys walking beside me as I navigated the new territory of AN World.   It's kind of like being thrust into some weird new theme park...and it ain't Disneyland, that's for sure...
 
My AN twin, PHYL, was a wonderful rock, because she RAWKS, of course.  And, Larry and the Tim Tams, (hmmm sounds like a boy band) also got me through, along with Cap't Deb and the crew of course.  What would I have done without all of you?  Stumbling around AN World by myself would have been a very lonely and sad experience, indeed.  Thank God somebody thought up support groups.   ;)

Hugs and slurpy kisses,

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

kraynok2

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Re: Five years!
« Reply #9 on: March 14, 2011, 06:56:53 pm »
Sue,
   CONGRATUALTIONS!!!!!! on your 5 year anniversary.  Be sure to celebrate this big milestone.
Sandy

Debbi

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Re: Five years!
« Reply #10 on: March 14, 2011, 07:08:14 pm »
Just wanted to ad my congratulations on your ANniversary!!  Imalso have TMJ problems - had them before surgery, but definitely worse post.  I am very interested to hear how the PT works.  I haven't tried that, wasn't really sure where to even start in terms of finding a therapist.  So anything you can share would be very welcome.

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

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moe

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Re: Five years!
« Reply #11 on: March 15, 2011, 09:16:45 am »
Hi Sue,
Five years already. Time DOES fly in our AN world, especially with great supportive people.
I too wish my T would go away, but it won't......Other than that life is GOOD!
Stick around now, ya hear? :D
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty