a newbie

[pauline]

I am Pauline from Phoenix and I was diagnosed a month ago.  I have lost some hearing in my left ear, sometimes I feel like my head is slightly medicated, I get tired early afternoon and I have major tinnitus.  I teach piano and I also perform with a piano quartet.  The tinnitus is affecting my piano teaching and playing bigtime!!  My AN is 4mm x 9mm.  I joined the ANA organization a week ago, read all the brochures and contacted the local person in Phoenix and plan to attend the next support group meeting.  My neurosurgeon is at Barrows Neurological Institute.  I feel very fortunate as to have stumbled on to this website when trying to find out more info on my AN when first diagnosed.  Just reading all the comments on the website has helped me a lot!!  So I thank all of you out there and please continue as it is a huge comfort to those of us who are newly diagnosed!

[Rivergirl]

Hi Pauline, I am also new to this forum.  I read everything even the archives, it is a comfort to know there are others with the same strange thing as myself although I wish none of us were here.  I am trying to say to myself, it is what it is and it could be alot worse so I am trying not to let it overwhelm me. I wonder if the piano increases the tinnitus, especially those high keys. I am thankful my job doesn't include loud noises just talking and the words do get a bit jumbled at times. Did the neurosurgeon discuss what you should do?
Watching and Waiting in New England

[Debbi]

Welcome to you both!  So glad you found this site - it has been a blessing in so many ways to so many people!  The folks here have definitely gotten me through some highs and lows for which I am forever grateful.  Look forward to hearing more from both of you - and wishing both of you some tranquil moments along the way.

warmly,
Debbi

[mindyandy]

Welcome Pauline!!!! This website gives a world of information and support. There is also www.cyberknifesupport.org where you can check whether radiation would be a right choice for you. Your AN is small so take time to investigate all your options......

WELCOME AGAIN!!!

[sgerrard]

Hi Pauline,

Welcome to the forum. I noticed you asked about CK, and also have a doctor at Barrows. You should get in touch with MaryBKAriz; she had CK at Barrows this spring/summer. In another topic, I think Jan mentioned a few others who had CK recently, as well. Mine was back in Sep 2007, which is practically ancient history these days.

For a small tumor like yours, watch and wait is a good option. Like me, though, you are losing some hearing, which was what made me decide to act sooner rather than later. CK is a good choice for preserving hearing on a small tumor, so I hope you get a chance to investigate that. Barrows is a good place for CK.

Best wishes and welcome,

Steve

[Dana]

Welcome, Pauline and Rivergirl,
So glad you found this forum, but I'm always sorry to hear not only of new ANers, but especially those for whom hearing is critical to the work they do.

It struck me as I read this 'newbie' thread how in just the last year, newbies are so much better 'educated' about ANs, especially about the options.  Seems like last year 'newbies' often came on the board completely freaked out with NO idea that they had options in terms of treatment (including wait and watch), that they had no time to make a decision, that they had to believe what the first doctor told them, etc etc.  Perhaps you guys are somewhat exceptions, since you had already read alot on the board (which I know I didn't do!!), but in general I think it's a wonderful "sign" that this board and AN education in general is really having a calming effect.

Keep us posted.  Pauline, there are others here in the music business.  It is, unfortunately, a topic for which there is no simple answer. Maybe there's a whole new genre of music for those with distorted hearing, I don't know!   I wish you the best.

Keep us posted.
Hugs,
Dana

[pauline]

To Rivergirl!!!  Because I am a musicain, my neurosurgeon suggested I watch and wait as my tumor is small and this will preserve my hearing the longest.  Somedays, when my tinnitus is screaming at me, I can not stand listening to any sort of music, especially the piano!  Maybe because my job, whether playing or teaching, requires sensitive listening, it seems to affect me more.  I do not know.  Heck, maybe my tumor just wants to be heard!!!  Ha...If my tumor grows, I am looking into cyberknife so I look forward to reading posts from people who have had that procedure!  Much luck to you!!!

[Jim Scott]

Hi, Pauline:

Welcome to the ANA website and the forum(s).  While I regret that you have the diagnosis of an Acoustic Neuroma, I'm glad you found us.  There is a wealth of practical information and advice here and we want to share with those who need it. 

I thought you might like to  know that Michael Bolton and Brian Wilson are  both are deaf in one ear (not from an Acoustic Neuroma) so your music career would probably not be over if the worst happened, which I trust it will not.  CyberKnife is quite effective and there is a lot of information available on that procedure.  I trust you'll pursue it as well as visit here often.

http://www.cyberknifesupport.org/forum/default.aspx

Jim

 

[leapyrtwins]

Pauline -

as Steve mentioned MaryBKAriz had CK recently - so did Tumbleweed, DebbieL, and fbarbera.  And even though Steve had his CK in 2007 he's still an excellent source of information - he's just too humble to admit it.  Phyl had CK also.

Dana is right.  The newbies are so informed lately - I didn't know much when I was diagnosed last year but I learned a lot from this forum, my doctors, and the ANA literature.

As Jim said, the CK Support Board is another great resource.  If you are considering CK, I'd recommend checking it out.

Jan

[Pooter]

Welcome Pauline!  We have lots of people with experience in each of the treatment options (some with experience in more than one).  So, ask all your questions!  Welcome here!

Brian

[pauline]

Hi all - thanks for the warm welcome and info on cyberknife!
I have perused all of it and feel like I am making the right decision with CK.  Now just
to wait and see what the next MRI brings!

Jim - thanks for letting me know about Michael B. and Brian W.  I did not know that! 
I know I can continue teaching  piano with the hearing loss.  I do not know if I can continue with the
piano quartet yet as acoustical balance is so important in a small performance group like ours. I can deal with the hearing loss,
but the tinnitus is the issue I have with teaching and performance.  Since listening is key in both, it seems as if the
tinnitus gets louder.  If I am doing other things, I can put it in the background.  Maybe I will be able to work with it in time.
Or better yet, it would go away after CK - time will tell.  There are other adventures to persue if need be.  I would love to hear from other musicians with AN if there are any out there!

Dana - when I found out I had AN, I immediately went home and googled and educated myself.  I also had a good neurosurgeon who explained my fears away.  But this support group with all the conversation definitely helped me the most as I felt connected with people who were going through the same thing.  So I really did not go through all the fear and confusion.  I also
have always had a very positive attitude and I think this helps a lot! 

Thanks all!