Author Topic: Another year and another diagnosis of Watch and Wait.  (Read 5516 times)

G_Man

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Another year and another diagnosis of Watch and Wait.
« on: May 24, 2013, 05:00:16 pm »
Hello fellow ANers.  I just wanted to post about my test results from my MRI on April 29th.  My tumor still remains the same size.  I have experienced more motion issues (slightly) and some bouts of tinnitus that weren't fun.  When I asked my doctor, "Will the motion issues every stop?"  His response was, "There are only two ways the balance issues will stop.  1. if the tumor grows and crushes the nerve or 2 if the nerve just dies."  He pointed out that most likely it would be the first one so being dizzy for the rest of my life is actually a GOOD THING.  My hearing test showed a little more loss in the lower end of the hearing spectrum.  Since my loss is already 55db and it's been that way for years I have concluded that surgery isn’t going to save my hearing so I watch and I wait and I hope to die at 99 with this little dark passenger in my brain.
G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Sheryl

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #1 on: May 24, 2013, 06:30:45 pm »
Sounds like good news!!  Hope you can continue W&W - I'm on year #11-1/2 - November will be 12 years. 
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

G_Man

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #2 on: May 24, 2013, 06:51:18 pm »
Thanks - I hope to be one of those long timers like you.  I'm only 50 so there's lots of time for growth if I live long enough.  Thanks for the positive thoughts.
G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Jim Scott

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #3 on: May 25, 2013, 01:26:12 pm »
Glen ~

Congratulations on your latest MRI results.

Observation ('watch-and-wait') can be a bit stressful but I'm pleased to learn that your AN remains 'stable' (aka not growing)  Sure, it might grow some day but I'd worry about it if and when that happens, not before.  Although, having a good idea (as you do) of how you'd proceed if it starts growing is prudent.  Let's hope your AN decides to remain dormant for the next, say, 50 years or so.  :)

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.

G_Man

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #4 on: May 25, 2013, 07:38:53 pm »
Thanks Jim for your kind words.
I have complete confidence in my surgeon who is probably one of the best on earth.  I think a lot of making the decision is understanding that there is really no good decision {meaning: you aren't going to walk away from an Acoustic Neuroma diagnosis clean}.  You have to accept your situation, choose your caregivers wisely, have faith and be prepared for the outcome.  I hope I never get to that point.
I'm also lucky enough to be part of a great local support group.
Anyone reading this who doesn't participate in a support group is missing out on a great resource.
G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Mickey

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #5 on: May 25, 2013, 08:32:09 pm »
Hi G Man! I`m hoping to make the next NYC meeting and see you there. Glad to here you last MRI came back stable. W+W can have its stresses but while where W+W we got to be pro active in our efforts to keep it in check. (W+W Brigade). So far so good for me 6 years now, MRI coming soon. Best wishes, Mickey

G_Man

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #6 on: May 25, 2013, 08:46:02 pm »
Mickey - I look forward to seeing you.  Your my inspiration man.  I'm bringin' cupcakes so you better be there.   I missed the last one, forst time 4 that.
G_Man
Diag: 08/11/2009 Left side
AN: 0.6cm.  65% Hearing loss, tinnitus, fullness, minor motion issues.
hearing loss over 25+ years.  MRI in 2000 showed nothing.
Optical Atrophy from infantcy
Watch and Wait.
As of 2017 I am on a 2 year MRI frequency.

Mickey

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Re: Another year and another diagnosis of Watch and Wait.
« Reply #7 on: May 27, 2013, 07:55:16 pm »
See ya there G Man! Mickey