Author Topic: Positive things about having an Acoustic Neuroma  (Read 21769 times)

leapyrtwins

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Positive things about having an Acoustic Neuroma
« on: July 05, 2009, 06:35:14 pm »
I've been away from the forum for days now and though I was very anxious to return, I can't help but be bothered by all the negative posts lately.  Yikes!!!  Enough to make a newbie scared out of his/her skin!  :o

In an effort to lighten things up, let's talk about positive things that have come out of being diagnosed with an Acoustic Neuroma.

Here's my list:

1) met two spectacular, honest, doctors

2) got a great knit hat from Steve  ;)

3) the tumor was benign

4) being SSD makes it easy to get a good night's sleep - just lay on your good ear

5)  the BAHA

6)  met a lot of wonderful people on this forum - most of who have been through a whole lot more than I have and lived to tell the tale - and with enthusiasm!

7) it made me realize how truly lucky I am.  So much in life is now trivial.

Pleae add to this list with your own positives.  And let's remember why we're here people - to help and support each other; not scare others away.

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

ppearl214

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Re: Positive things about having an Acoustic Neuroma
« Reply #1 on: July 05, 2009, 07:00:45 pm »
Hey Jan!  :-*  Countdown is on for CHI and hoping the bail money has been raised for me and Captn Deb :D


Great thread... I thought we did something like this a LONG time ago but too tired to dig up the thread, so will add to this as well:

1.  Thankful it was benign and treatable
2. Oh, the folks from this forum that I have met face to face, even in the UK. I've been honoured to be able to travel to different cities to meet so many AN'ers.
3.  The guidance given to me by so many others that were treated before me..... my true mentors on these forums and their help have just been so very appreciated by me.
4.  Steve's hat (gotta agree with that one, Jan! :) )
5.  I knock on wood that I am doing as well as I am for my AN situation.
6.  If anyone is going to keep me on my toes, its you all! The best exercise I could ask! :)
7.  the marvels of medical technology have come SOOO far since 30 or 40+ years ago. We are all so lucky that medical advances have and are available to us, regardless if surgical (docs now doing endoscopic) or radio (CK, Trilogy, etc).
8.  Compared to other medical ailments out there, oh, we are SO very lucky!
9.  Chasing Jan and Lori around this site! :D
10.  The friendships made here.... too many to count, too many that are so very appreciated and most of all... the love and support given by so many.

How's that Jan? :D

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

leapyrtwins

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Re: Positive things about having an Acoustic Neuroma
« Reply #2 on: July 05, 2009, 07:05:06 pm »
Excellent!  Let's keep the ball rolling.

I'm actually a "maybe" for the symposium now - might be stuck in San Diego working.  Hope not, but should know for sure real soon.

I'd definitely miss you and the Captain though - among others  :'(

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

ppearl214

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Re: Positive things about having an Acoustic Neuroma
« Reply #3 on: July 05, 2009, 07:06:48 pm »
well, if you go to San Diego, please go to the Coronado Resort for me and enjoy a beverage out back by the pool/beach, will ya? :D

Ok, added my positives... keep the ball rollin'.....

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

moe

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Re: Positive things about having an Acoustic Neuroma
« Reply #4 on: July 05, 2009, 07:08:02 pm »
Okay, how about
1. I'm blessed to be alive !
(apparently mine was pretty bad).

2. Definitely don't swear the small stuff

3. I Enjoy nature more


Unfortunately, a lot of people who continue on the forum do so because of long term side effects which can truly impact  their lives and are a pain in the #@$!! (I'm one of those >:( ) Those posts are usually different ones for the "newbies". Remember we are supporting all ANers in whatever journey they are in and I for one am going to be in it for the long haul, it seems. And every day is NOT happy for me. If the newbies or whomever reads those posts, ah well, it's a wide open forum and that's their choice I guess. We need to support everyone I guess.

The threads that I have been on all seem to be OK. I like to support the newbies.

Maybe we "scare" others away without realizing it. We're just giving honest answers to questions. Hopefully I didn't inadvertently scare someone.

Anyway,
I'm SO glad to have found this forum to help others and to see that there are others who have the same issues as mine. It makes it so much easier for me just getting through the days. I trudge on, that's all I can say!
Happy day!
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

Adrienne

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Re: Positive things about having an Acoustic Neuroma
« Reply #5 on: July 05, 2009, 08:23:44 pm »
*Have greater empathy for people with conditions or ailments that I've never heard of.  Because EVERYONE has the potential to be the "me" (as in "it can't happen to ME").  Now I know it does!
*Will NEVER take my health for granted again
*Love the Canadian Health care system even more.  Full treatment and not a dime (taxes, of course).
*Have gone through hell the last year (both with my husband and lung cancer, and me with an AN).  If I can survive a year like this, I can do ANYTHING!
*I'll remember that no matter how bad a situation seems when first presented, it is possible to get to the other side and be happy again.  Time (and surgery LOL) heals wounds.


Thanks.  Feeling so happy and positive these says, and happy to pass that along!

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

CHD63

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Re: Positive things about having an Acoustic Neuroma
« Reply #6 on: July 05, 2009, 08:44:43 pm »
a) looking at life with a whole new appreciation of what I have
b) finding I have many dear, helpful friends
c) basking in the wonderful power of prayer
d) learning it's OK not to be "perfect"
e) learning to be patient, not only with myself but with others
f) enjoying life in the present rather than trying to change the past or hoping tomorrow will be better

...... and I could go on and on

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

lori67

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Re: Positive things about having an Acoustic Neuroma
« Reply #7 on: July 05, 2009, 08:55:10 pm »
Well, you guys have already mentioned most of the things I would have mentioned, but I think I can add a few....

 - giving Phyl lots of exercise "halo-hopping"
 - the best knit hat I've ever had
 - learning to live in the moment and not always be looking ahead to what comes next
 - the compassion and support of people I've never even met
 - definitely - not to sweat the small stuff
 - learning to take care of ME - not just the kids and everyone else
 - learning that there are much more important things in life than material things
 - learning how to gracefully and tactfully remove negativity in my life
 - learning how to not feel guilty about others helping me
 - letting those I care about know that I care
 - and... my new motto - just because I may be in pain, doesn't mean I have to be one.

Lori
p.s.  Oh, and I've learned a lot of new words from Jim!   ;)
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.

saralynn143

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Re: Positive things about having an Acoustic Neuroma
« Reply #8 on: July 05, 2009, 09:06:35 pm »
Great thread... I thought we did something like this a LONG time ago but too tired to dig up the thread

I think the last go-round was positives about facial paralysis. http://anausa.org/forum/index.php?topic=7057.0

As one of your adopted step-children without an acoustic neuroma, just let me say how thankful I am to have found a place for information and support about facial paralysis. It is a less common surgical risk for the brain surgery I had, so the ANA forum has been a godsend for me.

Keep posting -- anything and everything -- the good, the bad and the ugly. God knows we all need support now and then, and there is no telling how each experience may turn out to be valuable, either now or for those who come later.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Kaybo

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Re: Positive things about having an Acoustic Neuroma
« Reply #9 on: July 05, 2009, 09:06:55 pm »
This is a great thread, Jan...I really have to think about this because for me, this was a LONG time ago and hopefully, many of the positive things have become a way of life for me...

Still pondering... ;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!

Keri

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Re: Positive things about having an Acoustic Neuroma
« Reply #10 on: July 05, 2009, 11:20:08 pm »
this is a great subject. i too will ponder it.
there was another 'similar yet different' thread that i also intended to post to a couple of months ago, but didn't get around to it. it was entitled " ?? something beginnings / happy endings" or something like that. pretty sure it ended with 'happy endings.'
i hope you get to go to the symposium, jan.
i'll show up tomorrow with my positives.
keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sgerrard

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Re: Positive things about having an Acoustic Neuroma
« Reply #11 on: July 06, 2009, 12:53:18 am »
?? something beginnings / happy endings

Happy Endings/New Doors: http://anausa.org/forum/index.php?topic=6260.0

It was started by Debbi in April 2008, and revived by me on her 1 year anniversary.

As for me, I get to knit those hats and mail them to people and have nice things said. Can't beat it.  ;)

Steve
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.

kenneth_k

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Re: Positive things about having an Acoustic Neuroma
« Reply #12 on: July 06, 2009, 03:29:01 am »
Futhermore, a great excuse for buying a Nintendo Wii to do balance exercises ;D

Kenneth

suboo73

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Re: Positive things about having an Acoustic Neuroma
« Reply #13 on: July 06, 2009, 04:11:10 am »
Hi Jan!

So many great things have already been mentioned.
How about the internet, this WONDERFUL group of people  ;D , and information, information, information!

I can't imagine how long it would have taken me to be in touch with others say 10 or 20 years ago.
The forum is GREAT!  I am grateful to all who have or will contribute.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

tenai98

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Re: Positive things about having an Acoustic Neuroma
« Reply #14 on: July 06, 2009, 05:00:47 am »
What more can a person add that hasnt already been said.  I'm alive, I can walk and talk maybe not perfect but hey I'm alive. And yes a perfect excuse for a WII and the Fitness. I acquired mine before surgery. Now I try to do 30 to 60mts a day and I've lost 8 lbs wooohoooo....
I was terrified when I first read a few threads on here theb I continued to read and read I mean many a hours and when I went in for surgery, I was calm. Normally I am nervouse with stuff like this but not this time. So calm that my blood pressure was normal...Its usually a little high. But now I love life and live for me.
JO ;D
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7