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Author Topic: Hello - I guess I am a newbie too  (Read 21344 times)

skipg

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Re: Hello - I guess I am a newbie too
« Reply #30 on: June 28, 2011, 10:04:56 am »
Congrats on the good report. I see another Dr for a 2nd opinion tomorrow. My original Dr just recently told me all is stable since my Jan 3, 2011 diagnosis and will schedule another MRI in Jun2012. Just do not feel comfortable as he never told me about AN's or options for treatment or even that I had an AN. Dr's in Cincy at the symposium immediately confirmed and showed me the little guy in my head. Thank goodness for ANA!!!

Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Jim Scott

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Re: Hello - I guess I am a newbie too
« Reply #31 on: June 28, 2011, 12:37:30 pm »
Chris ~

Congratulations!  I'm pleased to learn that everything has remained stable.  Your heightened awareness of hearing and ear-related issues is not unusual and why we need the MRI to put things in perspective.  Happy reading!  :)

Jim
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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.

chrisransom

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Re: Hello - I guess I am a newbie too
« Reply #32 on: February 10, 2012, 11:02:09 am »
I haven't logged on in a while - but just leaving an update to let you all know I'm still alive, active, and interested in ANA!

Last MRI in early January shows no change in my AN.  New symptoms? Well, maybe the tinitus has changed in tone and volume a bit - but I actually notice it more in my unaffected ear and perhaps a little wonkiness for a few seconds when I turn my head quickly.  But hearing test is "normal" in both ears - they say for a 50 year-old old my hearing is more like a 30 year-old's.  No drop in the higher ranges (but I still can't hear those uber high ringtones that the youngsters use on those phones). 

Anyway, still firmly in W&W and  I'll try to check in more - take care all!

Chris
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

SGBlons

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Re: Hello - I guess I am a newbie too
« Reply #33 on: February 10, 2012, 09:04:09 pm »
Chris

I just saw this thread.  I'm also in MN and had my consultation at Mayo on Jan. 19.  I was very impressed with Dr. Link and feel quite confident about getting my care there eventually.  For now I'm watching and waiting.  Are you aware of our local support group?  There will be a gathering in April in Edina.  I'm looking forward to meeting other ANs in person.  Maybe I'll see you there.
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5-7mm AN L; diagnosed 12/9/11
As of June 2014 now 9mm
Still W&W

chance1212

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Re: Hello - I guess I am a newbie too
« Reply #34 on: February 18, 2012, 09:13:59 pm »
I found your changing tinnius interesting. I have experienced several changes with mine. Mine is 24/7 and at times I hear several tones at the same time--like different levels & pitches. Does yours do this?  I have lost all of my hearing (only 3 months after diagnosis) in the ear with the tinnitus, so it probably seems louder than it would if I could hear. My AN is small, t--7mm--but I have many symptoms. You're very fortunate to have minimal symptoms. Remember to read about all the post op complications when making your decision. This is why I am waiting. It seems like there are few cases where the patient is better off after treatment--except in the life threatening cases. I wish it was an easy decision, but it's not. Keep us updated.
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6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

chrisransom

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Re: Hello - I guess I am a newbie too
« Reply #35 on: February 25, 2012, 10:46:22 pm »
Chance -

Yes - my tinnitus is often like a sympony orchestra warming up - many different sounds.  Sitting here repsonding to you i can hear at least two distinct tones in the left ear (the AN side) and right now it only seems like one in the right.  But that could change any second.  Often I hear an "outburst" - one ear starts pinging much loder than the other and it slowly fades back to "normal"  When I go to bed I can often hear my heart beat in my ears for about 30 seconds and when I yawn it's just a rush of sound - like a TV or radio that isn't set to a channel.  Sometimes it sounds like windchimes or a bell -  a more hollow  tone. Its just wierd.

Chris
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

Mickey

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Re: Hello - I guess I am a newbie too
« Reply #36 on: February 26, 2012, 05:50:29 pm »
Only if tinnitus came in as part of the treatment for AN`s. Im sure that we all would pick the treatments which that would include. At this stage of the game I`m so used to it that I can`t imagine what it would be like without it. Sounds crazy... In any case I sure would like to try someday. Best wishes, Mickey
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chrisransom

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Re: Hello - I guess I am a newbie too
« Reply #37 on: February 26, 2012, 07:27:34 pm »
I too dream of a day when I don;t have this ringing all the time.  I know it'll never happen.  My biggest challenge is sleeping in a very quiet room - it drives me nuts.  A fan, a faucet, a breeze, a freeway, a freight-train - all are welcome distractions.  I say take the tinitus - leave the AN. (hah!)
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

CHD63

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Re: Hello - I guess I am a newbie too
« Reply #38 on: February 27, 2012, 11:54:31 am »
Chris .....

I, too, suffer with unrelenting loud tinnitus ..... especially at bedtime in a quiet room.  On the recommendation of my audiologist, I purchased a sound machine with under pillow speakers (mine is Ecotones® Duet Adaptive Sound Therapy Relaxation Sleep Machine with Bonus Sleep Therapy Pillow Speakers).  I turn it on every night and then go to sleep with my only hearing ear down.  Sometimes I have to really concentrate to focus my attention on the babbling brook (my favorite of the choices), but it is far better than listening to the clanging and squealing tinnitus.  I really feel like it has helped me get a better night's sleep.

Good luck.  Clarice
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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

chrisransom

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Re: Hello - I guess I am a newbie too
« Reply #39 on: March 01, 2012, 09:51:54 pm »
Clarice - thanks for that bit of advice.  i used to have this little aromatherapy-soundscapes machine that had the babbling brook, crashing waves, prairie wind and forest sounds.  I liked the sound of crickets chriping and had it on daya nd night for years before I knew of the AN and before the tinittus got as loud as it is now.  I loved it - but, alas, it stopped working a couple years ago.  I hated the aromatherapy part though - little beads that smelled like soap. yuck.  It's probably time to buy an Ecotunes!
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

chance1212

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Re: Hello - I guess I am a newbie too
« Reply #40 on: March 19, 2012, 08:23:22 pm »
When you lose all of your hearing, you can no longer hear the sounds that you try to use for masking. :( Melatonin is my friend.
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6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt
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