Author Topic: watching 'n' praying  (Read 3737 times)

CMC

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watching 'n' praying
« on: December 07, 2014, 06:30:46 pm »
I have been referring to this site for 3 yrs and I finally decided to post.

Five years ago I was told I have a"growth" behind my ear I didnt know it was actually a brain tumor until I found ANA. My tumor is on the right side 11mm/9mm/8mm found incidentally on an MRI investigating blurred vision in my right eye. I was told atypical ocular migraines for the eye but I should see my physician about the growth behind my ear. Well I waited about 2 yrs when i noticed the ringing and difficulty hearing. Fortunately the tumor didnt and still hasnt grown and my hearing is still almost perfect on a test. For that reason I choose to watch and wait.

To all appearances i look fine. I can hear, walk straight, drive and go to work. But i am definately not fine. The ringing in my ear is so loud i can feel it. Keeping busy and noise are the only distraction. They tell me the blurred vision has nothing to do with the tumor but that has gotten worse along with the pressure and noise. I dont get dizzy but my head feels split in half. My body is at war it seems with acid reflux and fatigue.

am 43 married with a son in college. Im not planning to do anything unless the tumor grows. 2 neourotologists told me only 50/50 chance to save hearing and other symptoms not likely to resolve.  Ugh...so I take one day at time. I wanted to say thank you to the folks on this site for sharing their stories.  I don't tell anyone how im doing because I feel like such a Debbie Downer when I do. Now thanks again for understanding:)
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm

CHD63

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Re: watching 'n' praying
« Reply #1 on: December 08, 2014, 11:05:22 am »
Hi CMC and welcome to this forum .....

For a doctor to describe an acoustic neuroma as a growth behind your ear, is very unusual, to say the least.

I did not have blurred vision prior to my diagnosis of a AN, however I did deal with double vision for several weeks following my first surgery, so there may be a connection with eye focus ..... not sure.

If I were you, I would certainly pick out one or more of the major acoustic neuroma treating centers in the country and send a copy of my MRI for another opinion.  Most of these facilities will do free evaluations based on your MRI.

If your symptoms are getting worse and to the point they are greatly affecting your life, you need to seek out treatment options from highly experienced physicians (as in many, many acoustic neuroma treatments).

Just my thoughts.  Prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Mickey

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Re: watching 'n' praying
« Reply #2 on: December 09, 2014, 09:06:03 pm »
Hey CMC..  I`ve read your post and have a similar situation going on into my 8th year diognosed.   I`ve been watching and praying but also incorporated a pro active lifestyle which I would assume make me feel that this is the right way of handeling my AN. If W+W is your decision please go over the W+W BRIGADE posts to start and stay pro active in you health and research for being healthy.  So far its worked great for me (my post are all over).  Wishing you the best, Mickey P.S. Power of Prayer...

CMC

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Re: watching 'n' praying
« Reply #3 on: December 19, 2014, 10:12:12 am »
Thanks so much for your advice.  I am always looking for ways to improve my situation. I have often thought of sending my mri to House of Ear in California but for now I am pretty comfortable with University of Michigan. Im really just hoping to deal with current symptoms better, hoping they dont get worse and hoping I never have to get the bugger out:) I really appreciate this website. It has helped me keep it together and felt great to vent on a bad day.
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm

MG

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Re: watching 'n' praying
« Reply #4 on: December 22, 2014, 02:01:01 pm »
Hi CMC, I know how you feel. I am going on over a year on W&W. Everyday I think, do I have to feel like I do for the rest of my life? Well, I am almost 65 and my doctor doesn't advise me to have surgery. I am hoping it won't come to radiation either. So far so good. My AN hasn't grown from almost 1cm. I am losing my hearing and I get dizzy while driving but it comes and goes. I don't like to complain either. When my fiance' asks me how I feel I just say okay and try to smile. Just follow the W&W Brigade as Mickey mentioned. Take care and best wishes! :)
MG (Cathy)
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016