ANA Discussion Forum
General Category => NF2 => Topic started by: shelleykj on December 18, 2009, 07:31:54 pm
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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 ;)
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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
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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.
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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
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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
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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