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Author Topic: newbie here just glad to talk with others like myself  (Read 3841 times)

deb minor

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newbie here just glad to talk with others like myself
« on: October 28, 2009, 07:53:15 pm »
Hi I'm a newbie, Just found your site today.Sorry but glad there are people out there like myself that can give others support and advice.
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2x's ANer, 6/2003, 6/2008 same side 8mm & ?mm. Its very hard to adjust.
Headaches, Dizziness and horrible tinnitis.

wendysig

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Re: newbie here just glad to talk with others like myself
« Reply #1 on: October 29, 2009, 06:09:48 am »
Hi Deb and welcome.

I'm sorry to see you already been through so much.  What type of treatment did you have for your AN previously and are you considering treatment again or just watching and waiting for now?  Feel free to ask any qustions or just vent.  We are here for you.

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!

leapyrtwins

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Re: newbie here just glad to talk with others like myself
« Reply #2 on: October 29, 2009, 07:14:15 am »
Hi Deb.

Glad you found us too  ;D  There's nothing like being able to connect with others who are, or have been, in the same boat.

Give us a little more detail about your ANs, please.  I noticed you had (or have ?) two.  Does that mean are you NF2?  Have you had treatment or are you watch and wait?

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

Jim Scott

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Re: newbie here just glad to talk with others like myself
« Reply #3 on: October 29, 2009, 02:21:20 pm »
Hello and welcome, Deb ~

Thanks for joining us - although I'm sorry to learn that you've needed two surgeries and experienced post-op difficulties.  We're always eager to offer our support and whatever advice may be appropriate to other AN patients.  We're all too aware that having an acoustic neuroma is a relatively rare condition and we know that support is often hard to find, so, using our collective experience and our very personal understanding of the issues involved with an acoustic neuroma, we try to help AN patients, both newly-diagnosed and 'veterans' (like you) whenever the opportunity presents itself.  I look forward to your future participation on our forums and I hope your AN-related problems can soon be lessened or resolved.  

Jim

« Last Edit: October 29, 2009, 02:31:04 pm by Jim Scott »
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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.

Vivian B.

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Re: newbie here just glad to talk with others like myself
« Reply #4 on: October 30, 2009, 12:45:18 pm »
Hi Deb,

Welcome. Sorry you had to join us but very glad you did. There are so many of us here now that I am beginning to wonder about this condition being so rare like they say.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

CHD63

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Re: newbie here just glad to talk with others like myself
« Reply #5 on: October 30, 2009, 05:30:36 pm »
Hi Deb .....

I am so glad you found this forum.  You will find it full of understanding and empathetic friends.  Tell us a little more about your AN journey.  It sounds like you have had more than your share!

Clarice
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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

suboo73

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Re: newbie here just glad to talk with others like myself
« Reply #6 on: November 03, 2009, 04:41:03 am »
Hi Deb,

Welcome to the Forum - there are FANTASTIC folks here, as you have found out!
I hope you find some relief from your headaches & such. 

Sending thoughts and prayers your way.

Sue
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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

ppearl214

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Re: newbie here just glad to talk with others like myself
« Reply #7 on: November 03, 2009, 01:43:12 pm »
Quote from: suboo73 on November 03, 2009, 04:41:03 am

...there are FANTASTIC folks here


Sue, am I included in on that comment? ;)


Hi Deb and welcome. You've had a tough journey, but we're here to help if we can.  Glad to have you here and if we can be of help, just let us know.

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

deb minor

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Re: newbie here just glad to talk with others like myself
« Reply #8 on: November 04, 2009, 06:10:58 pm »
very glad there is a place for us! I think sometimes people in general don't understand that just because we still look the same, we don't feel the same as we used to. One of my big issues was that I had a new grand baby that I wasn't comfortable with holding and trying to walk d/t my poor balance.
 
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2x's ANer, 6/2003, 6/2008 same side 8mm & ?mm. Its very hard to adjust.
Headaches, Dizziness and horrible tinnitis.

suboo73

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Re: newbie here just glad to talk with others like myself
« Reply #9 on: November 04, 2009, 07:18:20 pm »
Deb, 

Wish i could make it so you could hold your grand baby...i imagine that is very frustrating.
But i bet you will find your own way to be near that precious bundle of joy!
I am so glad you are here and hope you find support and comfort from this Forum Family.

Sincerely,
Sue

-------------------

PS Phyl - FANTASTIC form family, including some FANTASTIC moderators- what more can i say?!  ;D
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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

lori67

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Re: newbie here just glad to talk with others like myself
« Reply #10 on: November 04, 2009, 08:36:30 pm »
Welcome Deb and congratulations on the new grandbaby!

Grandma's aren't supposed to walk around with the baby - that's what mom is for!   Grandma is supposed to rock the baby and snuggle and just sit and enjoy that little bundle of joy!  You probably did enough walking as Mom.  Now it's time to relax!   :)

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.

CHD63

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Re: newbie here just glad to talk with others like myself
« Reply #11 on: November 05, 2009, 03:45:32 pm »
Hi Deb .....

I can identify with holding the grandbaby!  Even at 19 months post-op, I am a bit uneasy walking and holding a squirmy 9-month-old (our youngest grandbaby) so I do as Lori said, I snuggle and cuddle while sitting/rocking or get on the floor and play with her.  I let her mom or dad do the walking/lifting ..... I feel safer that way.

Have fun loving in a creative, but safe way.

Clarice
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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

Tricia (horsekayak)

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Re: newbie here just glad to talk with others like myself
« Reply #12 on: November 07, 2009, 01:16:44 am »
Hi and welcome to the best place to be if you need to talk.

I'm newly diagnosed myself and wading thru all kinds of issues.  The posts and responses you'll get here will help you center yourself, educate yourself, and be yourself...
I'm glad to make your online acquaintance, and hope to get to know you via the forum.

You will learn so much here, and i really encourage you to sit and work through all the areas in the forum, and read the comments, etc.   Amazing folks lurk in these online halls !!!

You really are not alone;  that might sound a little trite, but it is the truth, and it is one thing that keeps me going through this roller coaster of emotions related to the AN  experience.   

Tricia

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Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington
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