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Author Topic: Website for young people with Acoustic Neuroma  (Read 13051 times)

SteveWWD

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Website for young people with Acoustic Neuroma
« on: December 11, 2006, 10:00:04 pm »
My name is Steve and I am a 26 year old who just recently had an acoustic neuroma removed.  I had a 1.5 cm tumor, and it has been completely removed and I still have some hearing in the ear on the operated side.  My furstration in finding out information about younger people with acoustic neuroma and their experience has prompted me to create a website of my own experience.  Please take a look, I hope it is helpful to someone.  It is http://www.myacousticneuroma.com/

Thanks.
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kristin

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Re: Website for young people with Acoustic Neuroma
« Reply #1 on: December 11, 2006, 11:10:17 pm »
very nice site..wish i knew how to do that! i can't believe you made the site in your second week home! that's crazy!! good luck in your recovery!

kristin
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8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

mylump

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Re: Website for young people with Acoustic Neuroma
« Reply #2 on: December 12, 2006, 12:08:55 am »
Good site Steve! Good luck with your recovery.
Lorenzo
« Last Edit: December 12, 2006, 12:26:13 am by mylump »
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Crazycat

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Re: Website for young people with Acoustic Neuroma
« Reply #3 on: December 12, 2006, 12:22:18 am »
Hey Steve,

  Nice page you got there! Also, you're a lucky guy to have retained some hearing on your A.N. side with a 1.5cm growth. Did you say it was a "translab" approach?
   Well, you'll find about as much info as you need from people of all ages in this forum! There's quite an archive of information here to explore. I look foward to hearing more from you!

                              Paul
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5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

tcrnko

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Re: Website for young people with Acoustic Neuroma
« Reply #4 on: December 12, 2006, 12:31:26 am »
Very Impressive.
Not only the site, but the fact that you kept it together enough in the "discovery phase" or your treatment to make the site make sense.

Keep up the great work.  As I can, I would like to follow your recovery.  Maybe I'll try to compare it to mine as I am 2 times your age.  Good luck.  My thoughts are with you.
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"Used to be a Neuro Nurse, Believe it or not."
1.8 x 1.6 x 1.7 AN Left Side
TransLab on 1/10/07.
Drs Mastrodonas & Cueva, Kaiser San Diego

nancyann

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Re: Website for young people with Acoustic Neuroma
« Reply #5 on: December 12, 2006, 05:27:22 am »
Hi Steve:

Quite the educational site, enjoyed reading about your journey.

Take care, Nancy
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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
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right facial paralysis

Lisa B

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Re: Website for young people with Acoustic Neuroma
« Reply #6 on: December 12, 2006, 07:13:41 am »
Oh ...Wow...
Is all that I can say.
That has you be the best site for me and I'm sure others. 
I'm sorry that you've been through this so early in your life , and to create and share this with others , it's just so great that you can help others.
Having the dialogue with all that info.  !!!!
My visits with the Doctor's has been mixed with so much anxiety that I've missed writing about the conversations.  It is so much less confusing when you can look and review all that you've posted. 
Much was very similar to my appointments but I was so far away in my head each time.
I hope that you are healing up well.   
You've done a wonderful thing for others and not just the young ones.
I'm 47 and I'm not feeling DIZZY with information after reading your web site.

 :D   Lisa B
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Wait and watch - 1ccx6mmx6mm - Right Side
Diagnosed August '06

krbonner

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Re: Website for young people with Acoustic Neuroma
« Reply #7 on: December 12, 2006, 08:33:41 am »
What a great site!  Lots of useful information, no matter what age you are!   :D

And congratulations on such a great recovery!

Katie
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diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Derek

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Re: Website for young people with Acoustic Neuroma
« Reply #8 on: December 12, 2006, 09:00:15 am »
Hi there Steve...

An amazing write-up which has been thoroughly researched, impeccably presented and which is a very easy read to digest. You have done yourself great credit with your effort and albeit I am almost 5 years down the road since diagnosis and a bit 'long in the tooth' you have certainly added to my overall knowledge. My sincere thanks and I would particularly encourage those that have been recently diagnosed to view your website.

Regards

Derek
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Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Gennysmom

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Re: Website for young people with Acoustic Neuroma
« Reply #9 on: December 12, 2006, 11:04:44 am »
Fabulous site!!!  A standing ovation from me!  Great job!!!!  What a wonderful resource!!!!!!!!
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3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Jim Scott

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Re: Website for young people with Acoustic Neuroma
« Reply #10 on: December 12, 2006, 03:51:55 pm »
Steve:

I just finished perusing your well-constructed and informative AN-related website.  I was very impressed.  Good job!  I want to both congratulate and thank you. 

Jim[/color]
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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.

Sue

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Re: Website for young people with Acoustic Neuroma
« Reply #11 on: December 12, 2006, 05:03:22 pm »
My goodness!  What a beautiful site that you did.  Very well done.  Congrats. ;D

Sue in Vancouver
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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!
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kat

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Re: Website for young people with Acoustic Neuroma
« Reply #12 on: December 12, 2006, 05:39:54 pm »
Hi Steve

Wow , I am really impressed by your site ! I am sure that at your young age surgery will turn out to be the best choice for you but just like all of us post treatment and surgery only time will tell .  You have certainly made your decision by doing as much research as possible . I am sure that you will keep us posted about any further developements .

Best regards Kat
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2.2 cm AN diagnosed July 2004 . GK at  the Royal Hallamshire
Sheffield UK in April 2005 2nd MRI in December 06 showed signs of the AN shrinking and MRI in FEB 08 showed no change . SO FAR SO GOOD .

stein78

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Re: Website for young people with Acoustic Neuroma
« Reply #13 on: December 13, 2006, 01:57:11 pm »
Hey Steve, great site!  I had my AN removed just before my 27th birthday. 
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29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

msuscottie

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Re: Website for young people with Acoustic Neuroma
« Reply #14 on: December 13, 2006, 04:10:48 pm »
That really is a great site Steve. Congrats.
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