Author Topic: Positive things about having an Acoustic Neuroma  (Read 21238 times)

ppearl214

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Re: Positive things about having an Acoustic Neuroma
« Reply #15 on: July 06, 2009, 05:33:58 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

that's definately one of them, Steve! Thanks for digging it up.

*starts chasing Lori around to see if I can knock the halo off again......*
"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 #16 on: July 06, 2009, 06:41:26 am »
As for me, I get to knit those hats and mail them to people and have nice things said. Can't beat it.  ;)

Steve

Okay, I'm hijacking my own thread.  Phyl can't get me for that one, can she ??   ;)

Aren't there still some hats out there that we don't have pictures of, Steve? 

Pictures, we want pictures!!  :D

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

Soundy

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Re: Positive things about having an Acoustic Neuroma
« Reply #17 on: July 06, 2009, 10:04:49 am »
I need to see a man about a hat ....

For me many things have been mentioned by others already...

I am alive and breathing , something that I was told was going to not be an option at
growth rate of Bennie

I am more grateful for my family than before ... I like grabbing and cuddling the girls even though
the almost 12 year old thinks she is too big for it ... she gives in casue I am the Momma and therefore
the boss ... at night she gives on voluntarily

I got a cool tattoo on my arm that I wouldn't have gotten if not for AN

I have meet y'all  8)

I keep Matthew 6:34 in mind and try not to worry about tomorrow and what it brings too much ...
everything in it's own time ...

I lost an ounce or two of belly fat that they took out to plug my head  :D





I am glad I am alive but still sweat some small thing ... need to work on taking care of myself ...not going
into depression etc etc ... I do OK until anniversary rolls around ... Now with July 2nd come and gone
I am good to go ... I think it is something like how some people start dreading turning 30 , then 40
then 50 ... but that is a whole nuther thread  :D
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

msmaggie

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Re: Positive things about having an Acoustic Neuroma
« Reply #18 on: July 06, 2009, 11:24:49 am »
I agree with all of you.  I am still amazed that I had brain surgery and am so-o-o-o grateful that I had so much love and support from my family and friends.  I can still teach at full capacity.  My faith walk underwent some long overdue scrutiny, and I am more than ever strengthened by my beliefs. I am grateful that I can do the little things that I missed doing or was not able to do when I was recuperating.  The meningitis was a problem long before it was diagnosed, and just walking made me gasp at the pain in my spine.  Now I can zip around the grocery store and not clutch the cart for support like an old lady. :D Who would have thought that could be so much fun?
 Yes, I am not the same person I was before.  I am more aware of other people's pain and suffering, and pray for them almost daily because I know there were many people praying for me.
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

anissa

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Re: Positive things about having an Acoustic Neuroma
« Reply #19 on: July 06, 2009, 12:40:32 pm »
Great idea!  My first thought was the "sleeping on the good ear" as being my favorite but as I read through the responses I found myself saying, "oh yeah, that one" to all the positive statements. 

Having an AN changed my life in a positive way, slowing me down, greater appreciation for everything/everyone, compassion, patience, and contentment.  I actually feel blessed for what I went through and am thankful.  Weird but true. 
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Lilan

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Re: Positive things about having an Acoustic Neuroma
« Reply #20 on: July 06, 2009, 02:05:20 pm »
I agree with a great many points already posted so will just add too that I feel like I have successfully climbed Mt. Everest.

I am surprised how empowering it feels to get through this. After all, "brain tumor" and "brain surgery" are jokes, synonymous for the worst/most complicated/most delicate thing you can think of at the outer reaches of your mind! "At least it's not a brain tumor!" "It's not brain surgery!"  :o

Whatever. Been there, done that, bought the Crocs.


« Last Edit: July 06, 2009, 02:30:40 pm by Lilan »
Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

Keri

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Re: Positive things about having an Acoustic Neuroma
« Reply #21 on: July 07, 2009, 07:33:34 am »
I agree with Lilan, having gone through brain surgery, you feel a whole new set of things you can do that maybe you were afraid of doing. I hate driving distances and highway driving. But 3 or so months post op I flew up to NH, rented a car and drove all around Boston, other MA cities so I could go to the MA get together of AN'ers (it was great meeting everyone) and then also watch my husband run the Boston marathon. I was insecure about driving in an unknown place, esp with some of the eye issues, but it went well. Then several weeks later, I actually drove a couple of hours away to run a half marathon (sounds stupid, yes I know!) I never would have driven that far, but I thought "hey, I already drove BOSTON for cryin' out loud; I can do this!" It's just given me more nerve - made me felt like more of a survivor (not in the sense that I feared for my life with the surgery, just in the sense that I don't want fear to keep me from something).

I also felt my faith in the Lord was strengthened, and all those Bible verses about His care for us really hit home. And I knew so many here on the forum and in my life were praying for me.

I also have loved being part of this forum and meeting the people here. The people here are so upbeat, encouraging, positive and helpful. It's great!  And we can bring up something non AN related and vent and say "help" or "pray for me" and the forumites respond with support and care.

Even though my AN related headaches are past, I now have much more empathy when someone shares, "I suffer from headaches." (or someone goes through surgery, etc).

Through my AN experience, I think I've learned (or am learning) to help and encourage others when they are going through something difficult.

Keri

1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

pamk

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Re: Positive things about having an Acoustic Neuroma
« Reply #22 on: July 07, 2009, 08:37:42 am »
I am so glad you started this, I found myself several times in my "search" having to not read the forum (and was told by my physician group not to).  Life can be so good after ...
My priest told me to be in the moment and feel the support and love coming from friends and family, we don't having the opportunity when things are going well.  he was so right and I have tried to continue that, be where you are, listen more, enjoy more, and focus on what is important in live.  That really does change after "brain surgery"  I went sailing last week for the first time since surgery and it was good.  I was concerned that is would not be much fun and would through my balance off, if didn't and I can do it!

Life is good
2.1 cm AN
Translab at House/St Vincent March 09.

leapyrtwins

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Re: Positive things about having an Acoustic Neuroma
« Reply #23 on: July 07, 2009, 01:07:21 pm »
Yea, the forum can be a scary place at times - which is why I always tell anyone who contacts me about their AN to take things with a grain of salt.

Very valuable information here, but you have to remember that everyone's experience won't be yours.

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: Positive things about having an Acoustic Neuroma
« Reply #24 on: July 07, 2009, 03:45:22 pm »
I can't add anything terribly significant to the list of 'Positive things about having an Acoustic Neuroma' but the tumor caused me to lose my sense of taste .  Because nothing tasted good, I practically stopped eating for a few months and lost about 35 unwanted, unneeded pounds.  After my AN surgery, my sense of taste returned but I had gotten used to eating less, re-thought my eating habits and have managed, without dieting or giving up a lot (just eating less of it) to keep the 35 pounds off.  I enjoy being at my normal weight again (I was quite trim until I hit my fifties) and so, I guess, in way, the weight loss was my 'positive thing about having an AN'. 

Like others, I also realized how much my wife loved me when she stayed in the hospital for three days (sleeping in the nurses lounge - with my doctor's O.K.), which was a lot more than I did for her when she was hospitalized for ten days a year earlier (spinal surgery).  She was always there by my bedside when I woke from my fitful naps the first few days, post-op.  Should she ever need to be hospitalized again, I'll be a lot more attentive to her because she showed me what love and devotion is.  I guess that qualifies as 'a positive thing about having an acoustic neuroma'.  I also appreciate my good health more than ever.  For years, I just took it for granted that I never developed back problems, diabetes, arthritis or any of the usual vicissitudes of middle age.   I now appreciate my health and take better care of myself.  Another 'positive thing about having an acoustic neuroma'!

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.

moe

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Re: Positive things about having an Acoustic Neuroma
« Reply #25 on: July 08, 2009, 11:14:13 am »
That's 3 very important and significant  things, JIM!

I almost forgot
My number one positive  thing about having an acoustic neuroma is....

I now have a valid reason for my nice daily naps :) I love em........ ;)
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

Captain Deb

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Re: Positive things about having an Acoustic Neuroma
« Reply #26 on: July 08, 2009, 04:24:14 pm »
The two big thiungs that jump out to me are that I'm no longer expected to keep the house clean and I get to have Phyll as a friend!

Hugs to you all.

Love,

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

cin605

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Re: Positive things about having an Acoustic Neuroma
« Reply #27 on: July 08, 2009, 07:09:39 pm »
Heres acouple i thought of:
I no longer drive over the speed limit
My grocery bill is less becouse i can no stand the grocery store
I spend LOTS more time at home
i do not take my health for granted
I used to breeze through everyday in abig hurry now i take my time
learned that trying to please everyone gets you nowhere fast
true friends are there for you
Familey?famly?spelling is not important but family is!
knowledge n research may scare you at first but help you in at the end of the day.
I am not alone w/ the dailey crap...as i see when i come here everyday
Thanks to all
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

stoneaxe

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Re: Positive things about having an Acoustic Neuroma
« Reply #28 on: July 08, 2009, 07:19:33 pm »
Great thread!

Not much to add to sentiments already expressed. A couple of simple yet profound changes.
1. Having an AN made me realize how lucky I am.
2. I probably would never have started standup paddlesurfing... ;D
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

wendysig

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Re: Positive things about having an Acoustic Neuroma
« Reply #29 on: July 09, 2009, 10:57:58 am »
I'm coming to this a little late but:

Ironically, this experience has restored my faith in human nature.

I'm thankful for the wonderful, supportive people I've met here.

Learned who my true friends are and that that they will be there, no matter what.

I had become mistrustful of the medical community at large, because of two very  bad experiences and learned once again,  there are many wonderful and caring physicians out there.  You just have to do your homework and be careful of who you put your trust in.

I am stronger than I ever thought I was.

There is life after an AN and it is good.

Wendy
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!