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Today marks two years of wait and watch

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targa72e:
Well today (June 1, 2007) marks two years from my initial diagnosis. I am waiting and watching and happy I did. Here is a little recap of the last two years.

Two years ago, Sudden hearing loss with fullness in ear. Speech recognition in the 60% range, MRI diagnosis of AN

Tinnitus started about a month later.

MRI 6th months later showed no change in size ( size was adjusted as misread on first mri to 5mm x 5mm). Hearing test showed some improvements

1 year hearing test showed hearing had gotten much better, now up to 95% . Had some weird balance feeling previous 6th months so scheduled balance testing. Also developed numb spot on tip of tongue.  Mri shows no change.

Balance testing showed 40%loss on AN side, also showed I had already adjusted to the loss. Everything else about the same.

1 year 6th month MRI shows no change

Year and 9 months, sudden change in hearing, a course of Prednisone returns hearing. Once off Prednisone upper eyelid twitching starts a week later, continues for 3 months and then just stops one day.

The last two years have not been easy mentally but I am glad with how things are today. I do not think with treatment I would be any better off than I am today. I still think about my AN a lot and how it will effect my life but I am now comfortable with were I am at. If I did not have new (but minor) symptoms pop up every couple months I could probably put my AN out of my thoughts. The good thing is that I still do everything I did before diagnosis. For now I will continue to wait and watch.

John

Jim Scott:
Hi, John:

Congratulations! 

Your situation is a good example of the benefits of the 'watch and wait' approach when dealing with a small AN.  An MRI established that you had a small acoustic neuroma tumor and you've continued to experience some relatively minor symptoms.  The fact that your hearing improved drastically is remarkable, as. according to my understanding, most AN patients don't get their lost hearing back.  Some do experience a slight improvement or the hearing loss stops at some point short of deafness, but, up until now, I haven't read of many AN patients doing 'watch and wait' that can state they have improved hearing, once it has been compromised due to AN-related nerve damage.  You're very fortunate and I'm happy for you.

Obviously, at this point, semi-annual MRI scans are the best way to stay on top of your AN and not end up with a large tumor that heavily impacts your quality of life while requiring high-dose radiation or even surgery to defeat.  You seem to be doing quite well and I have to agree with your choice to 'watch and wait' regarding your acoustic neuroma.  Again, congratulations - and may all of your future MRI scans continue to show no growth.

Jim

Sheryl:
And from another "Wait and Watcher" - wonderful news.  I'm at the five-year mark and was told I could go to MRI's every two years but for my peace of mind, I think I'll still go yearly.  Keep us posted.
Sheryl

ppearl214:
John

thirlled to hear that things remain on a good path for you......great news! :)

Phyl

Betsy:
John,

Congratulations!  Thanks for sharing with us.  I've been feeling a bit unsure of my decision to wait and watch, and it's encouraging to hear positive experiences like yours.  Especially the improvement in hearing...that's great!

Betsy

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