Yet another newbie

[EJTampa]

Hello Group.  My name is Ernie, and in about 8 hours I will officially be diagnosed with AN.
 
My MRI results say:
 
A 1.3 X 0.8 CM mass in the right cerebellopontine angle extending into the internal auditory canal consistent with vestibular schwannoma.
 
I think I have read nearly every thread there is here on this site in the last 12 hours  .  I guess it's probably time to get some sleep soon before my appointment.  I sure feel better about going to my ENT appointment armed with the knowledge I have gained by reading all your posts!
 
Some background for you.  About 6 months (could it be a year?) ago, I started to notice some hearing loss in my right ear.  I have had a long history of temporary hearing loss due to wax buildup, and ear drops followed by flushing with warm water has always corrected the problem.  Well, this last time, it didn't correct for my right ear.  I repeated the process but got no more wax.  Strange, I thought, but dismissed it.  About 2 months ago (or is it 6?) I noticed a ringing in my right ear.  Great, I thought.  Now I'm getting an ear infection.  The ringing persisted, but with no pain.  Over time, the ringing increased in intensity, and is now at the point where I can't ignore it.  It pretty much overpowers any background noise I have on, and when I do find myself in a noisier environment, the ringing gets so loud that when I get to a quiet place, it's amazingly loud.
 
My AN is considered small by most standards, but I don't yet know the growth rate.  I have had vertigo, but no numbness or facial problems.  It's funny that after reading so many posts here, I find a lot of people concerned (and rightfully so) about complete hearing loss in one ear.  For me, if that meant stopping the ringing, I'd be all for it.
 
Thanks for being here for me and everyone else who comes here looking for support!
 
Ernie in Tampa Florida

[Palace]

Welcome Ernie,


Yes, you're most likely correct that in a few hours, it will be official.  You have new friends here to help you---hold your hand.   

It's wonderful news that yes, your possible AN is on the smaller-side and caught early-on.

Once you have tennitis---that is usually always present.  You learn to "tune-it-out" over time........."so to speak."  It comes and goes but, is really always present.  Your mind/nerves do adjust to the loud prominent noise.  Noisy places are very irritating and frustraiting.

Things will get better once you discussis this in length.  I'm up and wide awake with a severe toothache.  I just had rootcancal and have two more to go in a week.  (plus opening the gums and stitches)  I've had 21 major surgeries and much physical therapy.  Most of my surgeries weren't AN related.  (few caused by the stress and trauma relation)  Yes, balace is a real problem, among other issues.

You will get better no matter the path you choose for treatment.  I'm not that far from Stanford so, I was treated there with CK almost two years ago.  I will soon find out if I have an NF2.  (end of next mo. is my next six-month MRI and ENT appointment)  I will have the creatintin testing before my MRI and next ENT appointment.

How severe is the vertigo?  What is your occupation?

Good luck and feel free to contact all of us...........we are here for you.



Palace

[msmaggie]

Welcome, Ernie!

This is the right place to be for all AN related maladies.  Most of us do have tinnutis.  Mine is just "white noise." It is there in the background, but I don't notice it unless the room is quiet. This is the tight place to be for support and encouragement.  There are no dumb questions, so don't be afraid to ask anything,

Sorry you had to join our motley crew, but it is a great bunch of people.

Maggie

[ppearl214]

Hi Ernie and welcome.

Well, as I tout around here.... "always be the best, well-informed patient you can be...".... and it sounds like you have armed yourself well thus far for such a short amount of time.  I'm sending wishes to you today for your appt... and know that we are here to help (as you already know).  Will wait for your appt outcome update so I/we can further support you...

Again, welcome... (now, don't hit me.... ) from a BoSox Nation permenant resident!

Phyl

[EJTampa]

Again, welcome... (now, don't hit me.... ) from a BoSox Nation permenant resident!

Hy Phyl!  Actually I'm trying to get tickets for one of the games, and since I was born and raised in Brockton Mass, I have to say GO SOX!
 
Thanks everyone for the encouragement.  I'm heading out to hear what my ENT has to say (while I still can )
 
Ernie

[MAlegant]

Good luck Ernie, and post again so we know the results.  As you can see and have read, this is not good news but it is treatable and most of us come through just fine. 
Thinking of you,
Marci

[Jim Scott]

Ernie:

Hi - and welcome.  I'm never happy to learn that someone has been diagnosed with an acoustic neuroma but I'm always glad to see an AN 'newbe' post here.  It shows real interest in researching your condition.  More importantly, I know these forums and the folks that fill them will surely be able to provide information and support based on real-life experience, not merely theoretical, which is all most doctors can offer.   As you know, we're not doctors (well, most of us aren't) and we don't attempt to offer medical advice or tell anyone what they should do as far as treatment.  We simply offer our hard-won knowledge with the vagaries of the AN experience and of course, our full support in whatever path you may choose as you walk through this journey no one wants to take. 

You seem to have this pretty well covered, Ernie.  The early risers and non-sleepers have responded with good thoughts and I can only add that if and when you have that 'official' word (from your ENT) that you do have an acoustic neuroma, we'll be here with whatever we can offer.  Don't be shy about asking questions.  We've all been where you are now, and we completely understand your emotions and the kinds of questions you may have.  Use these forums as a sounding board, venting place and a refuge.

Here's to better days. 

Jim

[leapyrtwins]

Hi, Ernie and welcome to our world 

Sorry you have an AN, but very glad you found us.

As you say, your AN is small but it's on the higher end of small.  You may decide to watch & wait a while before treatment, or you may decide on radiation or surgery.  I'm sure your doctor will be able to help you with that decision.

Although your treatment decision is a very personal decision, we'll all be more than happy to give you our two cents worth and share our personal experiences - if you'd like.

In addition, I'd like to recommend you contact the ANA for their informational brochures; I found them very helpful and an excellent resource.

Good luck with today's appointment.

Jan

[mindyandy]

You will get better no matter the path you choose for treatment.  I'm not that far from Stanford so, I was treated there with CK almost two years ago.  I will soon find out if I have an NF2.  (end of next mo. is my next six-month MRI and ENT appointment)  I will have the creatintin testing before my MRI and next ENT appointment.

Palace
I do hope they confirm that you are not NF2. If by chance they do the NF2crew website is a great place just like this place is. Like I said I do hope they find it not to be true.
Do you have any family history?

[andrea in slc]

Welcome aboard Ernie!

The people here are so amazing, it still blows my mind how helpful, knowledgable, and GOOD everyone is.  I joined up about 3 weeks ago, so I still consider myself a newbie, but the things I have learned, this place is irreplacable. (pardon any spelling errors please)

Sorry you have to join us here in "Dizzyland."  As others have said, whatever route you chose to take, learn as much as you can! We're here for you!

Andrea

Oh, and our Motto is "I may have a brain tumor, but I'm not crazy!"   

[mimoore]

Hi Ernie,
Welcome, I too read every thread before I finally posted my own story. I have felt at peace here. Asking questions and getting lots and lots of support. Honestly I feel that it is truly been helpful in my recovery - I don't feel alone. We are here for you.
Michelle 

[Debbi]

Hi Ernie-

Welcome!  Hopefully you will get a firm diagnosis today.  Meanwhile, so glad you found this site and have been educating yourself.

I didn't have the tinnitis problem and have not really had any problems with that since surgery either, other than some mild symptoms for the first month or so post op.  Since I had translab, I am SSD, but that isn't nearly as bad as I had anticipated.  I also got the dreaded facial palsy, but at 5 months I am starting to see some real progress on that too. 

As I am sure you already know, knowledge is key.  As is getting several medical opinions concerning treatment options.  I consulted 3 different doctors who all recommended the same approach and who all said I wasn't really a candidate for radiation due to the location of the tumor.  Everyone is different and while "size does matter," location is of equal or greater importance.

As you travel this path, know that you have lots of new friends here so you'll never be walking alone.

Debbi, from NJ

[calimama]

Hi Ernie,

Wow, you sound so calm. Knowledge is power! I think you are well ahead of the game. Sorry that it looks like you are a new member to our club, but trust you will find great info and support here.

Trish from Toronto, Canada

[EJTampa]

I'm back, and about to head off to work, so I don't have much time to answer the questions that were asked here (yet).  Doctor doesn't really want to wait too long, and is strongly recommending surgery.  I put a picture of my MRI up, since I just thought that was the coolest technology I had ever seen .
 
If anyone knows of any outstanding surgeons in the Tampa area, please let me know.
 
Ernie

[Tamara]

It concerns me a little that your doctor doesn't want to wait - make sure YOU are comfortable with what is going on!  Your AN is small and you have time to research and get 2nd or 3rd opinions if you so desire (unless there's something unusual with your AN).  Please don't feel rushed.

BTW, though almost everyone still has their tinnitus after surgery, I like to be rare - this time in a good way - and mine is greatly diminished to the point where I really forget it entirely.  Sometimes I even think it's GONE!

Take Care,
Tammy