General questions from Newbie

[davematern]

Thanks to those who read my first post and to those who responded! Makes ya feel good, you know?!  My questions are simple, really.  Is AN considered a condition, a disease, just a growth, or what? Just curious as to how to handle peoples questions.  Also, do the tumors start as an extremely miniscule thing? Do some people feel symptoms much later in the size of the tumor? So for instance, has a person with a large sized AN had lots of symptoms for longer periods of time, or what?  Just curious. On another note.....I played trombone professionally for decades, the latest being 20 years playing in the Spokane Symphony brass section.  Got pretty damn loud at times,even though I was the cause of the sound a lot of the time. Been playing orchestral music for the last 40 years or so, probably had a lot to do with my AN.  Thanks again to everyone........keep smiling, everybody!!......Dave in Walla Walla

[Pooter]

Dave,

Welcome back.  To answer your questions, an AN is really considered a mass or growth.  Handling questions is really all about you. Some peole tell anyone and everyone while others keep it private. Your choice.  ANs are very unque as for as symptoms go. I had a reatively big AN but only had noticeble symptoms for a few months and they weren't major (except the hearing loss and tinnitus). Others with much smaller ANs have major symtoms for a longer time. Some small ones are very symptomatic some not. Some larger ones have minimal symptoms while others are very symptomatic. Location of the tumor (which nerves are directly affected) is more indicative of being symptomatic rather than size.

FYI, I doubt the orchestra playing contributed significantly to your AN. You likely will still be able to play. It will be slightly different but it is likely that you can. Great incentive to recover from treatment quicker.

regards,
Brian

[leapyrtwins]

Hi Dave and welcome to the Forum.

An Acoustic Neuroma is a tumor. 

Have you contacted the ANA for their informational brochures yet?  If not, you should.  You'll find them very informative and helpful.

Best,

Jan

[james e]

They start as tiny little things. I just got out of surgery March 24 for the right side. Found out right away I have a brand new one on the left side. Just a little small one, but there. A MRI will measure its growth every year, and I hope that thing never grows any larger than it is.  I am back on the watch and wait list.

A benefit to the surgery was a nerve on my surgery side was set aside for a cochlear implant if I ever need that.

[leapyrtwins]

I just got out of surgery March 24 for the right side. Found out right away I have a brand new one on the left side. Just a little small one, but there.

james e -

does this mean you've been diagnosed as NF2?

Sorry for the hijack, Dave.

Jan

[Cheryl R]

James, I am sorry to hear you are becoming one of the small minority  of us who go on to discover in time we have NF2.    I do hope yours will be slow growing.  They seem to be very individual in how it does go but just more  nerve wracking in knowing what the best way of treatment can be.          My other side tumor never showed up till around 2 yrs after my first AN surgery.    Just make sure your have a neurotologist who is very well versed in NF2.    House in LA is one  but I am lucky to have my surgeon at Univ of Iowa who has several NF2 pts.    Every dr seems to have their own way of how to deal with treatments.                I have been to several now of the AN symposiums in which some of the House drs also attend.      Dr Slattery has gave the NF2 sessions at these and helps to know their take on it all and is similar to my neurotologist. 
                   I wish you well and hope you are doing well yet past this recent surgery!
                                                                    Cheryl R

[james e]

WE, the doctor and I have not talked much about it, but he talked about it with my wife. When my first MRI was done, it was not a high detail exam...they were looking to see if I had another stroke. Good news, no new stroke, bad news, acoustic neuroma. I sent my MRI to HEI and a doc out there thinks he sees something on the side opposite my tumor and he asks for a higher detailed MRI. Long story short, there is a high lighted area on the high detail MRI. My surgery in Houston was a week ago, they preserved a nerve for a cochlear implant, installed a BAHA implant, and told my wife I will need annual MRIs on the high lighted area. I will be going back to Houston this week and will find out even more. The doctor told my wife that this high lighted area makes it a family issue. My sister, 62, just started using hearing aids because all of a sudden she can't hear much of anything. So, has anyone rubber stamped it NF2...I'll find out this week. A resident told me that if a new surgery destroyed my "good side" the preserved nerve from this recent surgery could be used for a cochlear implant. All of this is very much brand new, and I can't say I have much grip on it yet. I'll keep you up dated.

[Cheryl R]

Just what one doesn't want to hear when just having surgery on one is more than enough to recover from and adjust to.       Feel free to ask us any questions or even PM me if desire as I know too well what it has been like.                   One more thing to adjust to in time.                I have no family history of any and mine is probably a genetic mutation.
                                I wish you well!               Cheryl R

[Sue]

Hi Dave,

AN's grow one cell at a time.  One day, for whatever reason, (and I don't think playing in a symphony has anything to do with it) the schwann cells on the coating of the balance nerve decides to go a little crazy.  So, one by one, the cells grow into a non-maglinant tumor and proceeds to do it's thing, which varies from one person to the next.  Depending on the person, the location of the AN and because it's a Tuesday (in other words, who know's why?) some people can grow a pretty good sized tumor before they notice symptoms.  Other people will have big time problems and the AN is itty bitty.   Technically you could call this a disease:

disease |diˈzēz|
noun
a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury : bacterial meningitis is a rare disease | a possible cause of heart disease.

I am not fond of saying that because to me, it sounds like it is passed from person to person, like a cold.  You can just tell people it is a benign tumor growing on the balance nerve, but it also affects the hearing since the nerves are so close together.  But, benign doesn't mean friendly.  If a tumor can grow so large as to eventually press against your brain stem, then, no...it's not friendly.  Next question will be the cell phone debate.  No..not caused by cell phones or by stress or loud noises  (but you can  get tinnitus that way!) or by any by-product of the modern age, because that doesn't explain that people have gotten this for a long time, although it wasn't discovered until recent history, as in 100 years ago or so.  NF2 has a genetic link.  One sided AN's have not been proven to have that.  You can google Chromosome 17 and read about some of the things associated with that. 

Almost everybody who gets this questions why and how they got it.  We all did.  It's a natural question.  Right after we say, "I have WHAT?", comes "And HOW and WHY did I get THAT?"   I'm sure Michael J. Fox said that with his Parkinson's.  So...the answer is that some of us humans will get a chronic illness/condition/disease ("persisting for a long time") some where along the line, and sometimes it's Vestibular Schwannoma/Acoustic Neuroma.  And that's just the luck of the draw I guess.  And our only compensation is that we live in 2010 and we have modern medicine to kill the darn thing.

After 4 years of living with my 'condition', I'm still gobsmacked that I have such a thing.   I'm also very grateful that I wasn't handed something far worse. 

Feel free to read my blog on my AN, if you want to slog through it.   

And you can always tell people that you are that one in a million who has this.  Just think, you might be the ONLY person in Walla Walla with an AN!!   

Sue in Vancouver, USA