Author Topic: My 20th Anniversary since Surgery  (Read 5977 times)

shelleykj

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My 20th Anniversary since Surgery
« on: December 18, 2009, 07:31:54 pm »
Hello Fellow NF2 Members:  Next week will be my 20th Anniversary since my AN Surgery on my right side.  It left me totally deaf on that side.  After several followup MRI's in 1992 or 93 a second tumor/nodule was found on my left side.  It has been a wait and watch program and the good news is, NO measurable growth in all these years.
Life has not been a walk in the park for me, but I have been fortunate.  For years after surgery I had major headaches,  Balance has always been a challenge, but I keep throwing that challenge right back at my brain.
I am now 65 and very active.  Ride my bike, hike in the mountains and like to take my dog for long walks.  Played golf for several years, but had to stop about 10 years ago due to other health problems.  Last summer I started to play a little golf again.  Still causes me dizziness, but I will not give up.  I also took up music as a hobby, I sing play the Guitar, Dulcimer, Keyboard and Digital Drums.  Yes, I'm hearing impaired and wear one hearing aid on the leftside. 
In the last few years many other tumors have appeared.  I now have a 3rd brain tumor (under the lining of the brain), was told it is common and benign.  There are 4 tumors in my right lung and one on my left breast.  Have several on my legs that have been there for years.  I told my husband if they were to remove all my tumors, I'd be a 90 lb weak link.
The Doctors are very concerned about all my tumors and put me through lots of tests.  They never can come up with any answers, just that they are all benign and see me in 3 months.
That is my story, just wanted to share it with my fellow NF2 Members.
Shelley  ;)

sgerrard

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Re: My 20th Anniversary since Surgery
« Reply #1 on: December 19, 2009, 12:11:19 am »
Hi Shelley,

I can't really imagine what it is like to have tumors sprinkled around like freckles in so many places, but something about your story says to me that you are doing okay despite it all. And you know what? That is the main thing. I say keep on watching and waiting, and keep on bike riding and hiking and walking the dog and trying golf and playing music. Let the doctors do the worrying.

Thanks for posting, and have yourself a merry little Christmas and a cheerful 2010.  :)

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.

shelleykj

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Re: My 20th Anniversary since Surgery
« Reply #2 on: December 19, 2009, 06:53:11 am »
Thanks Steve for you kind words.  The glass is always 1/2 full in my house.  Besides, I'm told I look "Marvelous Darling"! I'm a survivor.

Jim Scott

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Re: My 20th Anniversary since Surgery
« Reply #3 on: December 19, 2009, 03:21:42 pm »
Hello, Shelly ~

Thanks for your 20-year update.  Frankly, I thought I had mis-read the thread title but obviously, I didn't. 

I'm sorry to learn of the many tumors you seem to be generating but as long as they are benign you're O.K. , although I suspect many MRI scans are in your immediate future.  I admire your positive, 'can-do' attitude in the face of all this and I hope readers of your post will take heart and realize that while a positive mind-set can't make ANs disappear, it sure can make living with them (or the consequences of surgery/radiation) a lot easier.  Hiking, biking, golfing and playing musical instruments are all victories over your medical condition and I applaud you for these achievements.  :)

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.

Keeping Up

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Re: My 20th Anniversary since Surgery
« Reply #4 on: December 31, 2009, 07:44:51 pm »
Love your post.

The NF2ers face a very difficutl path with their diagnosis - you obviously have strong spirit (and a sense of humour).

Congratulations and go get them in 2010!

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

suboo73

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Re: My 20th Anniversary since Surgery
« Reply #5 on: January 02, 2010, 06:10:29 am »
Love your post.

The NF2ers face a very difficult path with their diagnosis - you obviously have strong spirit (and a sense of humour).

Congratulations and go get them in 2010!  Ann

Hi Shelley!  You are in inspiration to us all - congratulations and keep on 'truckin' - FABULOUS!

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