Anxious

[beancounter]

I just found out I have a "tiny" acoustic neuroma, detected by an MRI that was ordered to rule out something completely different.  I have no AN symptoms, but I now have fear and anxiety about it, as well as a general feeling of "gloom and doom".  Does anyone have any advice for me?  My gut feeling is to do nothing, because I have no symptoms, yet I am afraid it will get worse and I will regret this decision.  Thanks, God bless, and good luck to all.

[leapyrtwins]

Hi, and welcome, I'm a beancounter too. 

ANs typically grow very slowly, so if yours is small and not giving you any "trouble" the best thing might be to watch and wait.  I had surgery, but my AN, while not huge, was large enough to have to do something about.

There are many members on this forum who are watching & waiting and it seems to be working for them.  I'm not a doctor, but it's my understanding that as long as you get routine MRIs to check on the growth of your AN, you should be okay. There may come a point where you have to take "action" (surgery or radiation) but it could be years from now.

Jan

[Joef]

"watch and wait" is common for little AN's ... at least you will know the symtoms if they come.. thats half the battle!

[Battyp]

Hi Beancounter,
 How big is tiny? If you are not symtomatic then waiting and watching is a viable option. Just keep in mind if you start experiencing a change in your symptoms then you go start to the doctor!  The biggest issue is the knowing it's there too bad there isn't a magic pill we can take which allows of to "forget" until the time is right!

All my best,
M

[beancounter]

Thanks to any and all who have taken the time to read and/or respond.  I am trying really hard to remember that everything is relative, and there are so many who are much worse off than I am with conditions that are terminal or incapacitating.  My goal for the moment is to try to get past the stress headache and the knot in my stomach.  No one has any guarantees in this life; I have been very fortunate in so many ways.  Who am I to complain?  Fear is crippling, and on this day I am consumed by it.  It is amazing how self centered I am right now, and I am ashamed of it.

[lori67]

Don't be ashamed at all!  It's perfectly normal to worry about yourself when someone tells you there's something in your head that shouldn't be there.  I think you'll see here that there are some people who have had a tough journey, but they came through and still have a good sense of humor about the whole thing.

I always tell myself that it could have been worse and there are people out there dealing with much harder things, but sometimes it's easy to say those things - but not so easy to believe them.  Everyone has their down days.  Hopefully there are people here and around you that can help you out of those bad days.

As was said earlier, at least you know what symptoms to watch for so as soon as anything weird starts happening, you can act on it.  I hope you never have any symptoms as a result of the AN, but at least if you do, you will have had time to educate yourself about the best course of action at that point.

And in the meantime, you can use it to your advantage - if you do or say something stupid - just blame it on the AN.  That's what I did.  Now that it's gone, I have switched to the "I just had brain surgery" excuse.

Hang in there and think happy thoughts!
Lori

[4cm in Pacific Northwest]

Beancounter,

Acoustic Neuroma tumors are typically slow growing. Unless you were given alarm bells about an “S� shaped brain stem (I had that) or closing ventricles ... I would just “watch & wait�. Do some reading, research, protect the good hearing you have (wear ear plugs at loud concerts working with power equipment, do not turn the I-pod up too loud etc) …and take the time to understand what an AN tumor actually is. The majority of the cases are benign and only the minority are NF2.

Much will depend on
a) Size of tumor
b) Location of the tumor
c) Your age

This website (and the AN discussion forum) is an invaluable resource. Just try not to get overwhelmed by all the testimonies.

There are some good little inexpensive booklets on this link
https://secure.baxinternet.com/~anausa/for_sale.html

Acoustic Neuroma Basic Overview (AN1)
General information on acoustic neuroma, including treatment options and common symptoms.

Price: $1.50

And

Diagnosis Acoustic Neuroma: What Next? (AN3)
An in-depth description of acoustic neuroma treatments, including questions to ask the treating physicians and what patients may expect at the time of the procedure.

Price: $2.00


Just do not let yourself be pressured by any surgeon. There are various opinions out there… take the time to research and understand what (and who) is best for you. Try to pick a 'neurotologist / neurosurgeon' consult team (even if you do not need to have surgery or radiation just yet) who is well experienced and reputable to consult with.


Here is the ANA physician list as a start point
http://www.anausa.org/physician_list.html

Here is the ANA list of medical centers
http://www.anausa.org/medical_ctr_list.html

(I deliberately went out of state for my treatment as I only wanted a team that was very experienced, highly qualified and reputable)


Quoting you
“the stress headache and the knot in my stomach�
“Fear is crippling, and on this day I am consumed by it. “

Most likely your biggest fear right now is “the fear of the unknown� (most of us where there at one point I clearly remember the stress headache and stomach knot)

HUGS


Keep moving forward and enjoying your life and all you hear. If your tumor is tiny, as you say, – then start reading up on this ‘part-time’ and don’t let it consume you. I know I am repeating myself but …“Acoustic Neuroma tumors are typically slow growing…"

Posting on this forum is your first step in the right direction...

4

[Juliette]

Hi !
Just wanted to say, youre at the right place right now. This forum  is blessing for not feeling alone.
you'll see the more you learn about An the less anxious  you'll be. Give your self time.

Bye Julie

 

[Yvette]

Dear Juliette and Beancounter, just remember that many of us have come out of this surgery just fine and are doing great. Be encouraged! It is so nice to be on the other side! As someone said here, "if you're going to have a brain tumor, this is the one to get!" You are going to be fine:-)  Yvette

[Jim Scott]

Hi, beancounter:

I'm sorry you have a reason to be here (a diagnosis of having an acoustic neuroma tumor) but glad you found us, as this is a very informative site and this forum consists of some very helpful people who know what you're experiencing.

If your AN is really small and you're asymptomatic at this point then 'watch and wait' (do nothing) is likely your best option.  However, as your doctor will undoubtedly inform you, that requires at least an annual MRI scan (possibly semi-annual, depending on your doctor's advice) to watch for any growth of the AN tumor.  Radiation treatment is a probably viable option for you - again, your physician will advise you, we can't - and is generally efficacious for most AN patients that undergo the treatment, which comes in various forms. 

Trust me, we're all full of anxiety when first diagnosed.  This is scary and something few people have to deal with.  Unpleasant consequences can occur from surgery and/or radiation.  Not always, but sometimes, and those seem to the ones you read about.  My AN was relatively huge and had to be operated on quickly, with little time for much mental/emotional preparation but, even at my age (then 63) I pulled through just fine and recovered quickly. Today, you wouldn't know I ever had the tumor, surgery and five weeks of daily radiation treatments following.  My symptoms disappeared, I've conquered lingering balance problems and fully adjusted to only hearing in one ear.  Because you have no symptoms, you're fortunate.  Your AN many never grow (it happens) or grow so slowly that you 'll have lots of time to prepare for treatment, be it radiation or surgery. 

One thing I always mention to newly diagnosed patients: an acoustic neuroma is not malignant (cancerous) and it is very treatable. 

You'll be fine and the anxiety will pass.  Please stay in touch with this forum.  We understand what you're going through and we care.

Jim

[er]

Hello beancounter,

It's normal to have the feelings you are feeling. But when my doctor mentioned he has done thousands and not to worry I went into surgery not being afraid. I had a peace with his reply.
God really blessed the hands of alot of these surgents. Live for today
eve

[cheza]

Hi beancounter,

your in the best place, If I feel anxious I just log on to this site and read all the positive thougts left by everyone on here, we're all very nice people and of course all have one thing in common, most subjects are covered on here and most questions answered in the best way possible, so never feel afraid to ask, even if you think the question seems pretty dumb guarantee someone will have asked the question before and that someone on here will know the answer  or know the best place to find it.try not to feel all doom and gloom, they say laughter is the best medicine and who ever THEY are...their right,
you need to think positive thoughts, its been found, it can be removed (if needs must) and you've just found a site full of new friends.

wising you well,

Keep smiling 

Cheryl  XxX

[Brendalu]

Hi Beancounter,

Welcome to the group!  Everyone has your best interest at heart and will do everything possible to make this journey an easier one.  I think the first thing I would do is get something for the anxiety and the stress headaches.  Once you deal with those two things I think that the AN issue will seem like the easy thing to deal with, especially if it is a little bitty thing, you can be a wait and watcher with.  Prayers and happy thoughts.
Brendalu