New Diagnosis 3/24 3.2 mm x 3.8 mm

[Jenn15b]

Hello, I have been lurking on here for about a week.  I was diagnosed last week and I see a specialist in two weeks.  I have not lost any hearing that I know of, my current symptoms are extreme headaches, minor ringing in the ears, tingling hands, and perception episodes.  Since it is small, I think normally the plan would be to watch and wait, but I am having these symptoms and would like to perserve my hearing.  Any thoughts?

[leapyrtwins]

Jenn -

watch & wait is a good option for some but if your symptoms are problematic and you're concerned about your hearing, I would not wait for treatment.  This is just my opinion, and others may or may not agree with me.  Although most ANs grow slowly, there are always exceptions plus small ANs don't necessarily mean no permanent hearing loss.

A tumor your size should give you the options of radiation and surgery - but it's a personal choice best decided on by you.  What is right for one, isn't right for all.  If you go the surgery route, ask if mid fossa is a possibility for you (it gives you the best chance of saving your hearing).

If you haven't already, you should contact the ANA and ask them for their informational brochures.  They are very educational and will help you in your treatment decision.

Good luck,

Jan

[Jenn15b]

Thanks Jan,

I just received the informational packet yesterday and have been reviewing them.

[Lizard]

If you really want to preserve hearing I would not wait for treatment.  Good luck with your decision, its the first big step 

[Barb909]

Hi Jenn,

I, too, am newly diagnosed and am searching doctors and options. I have mild hearing loss and lots of roaring in that ear, but that's it. I am hoping to preserve the hearing that I have. The first group of doctors in Seattle said to plan on losing hearing; hoping the doctors in Cincinnati, where I have family to help after surgery, will be more optimistic! But I can tell that my hearing is slowly fading week by week. Makes me wonder if the thing is growing.

This site has been so helpful. Good luck with all of this and know you are not alone.

Barbara

[Jenn15b]

I would love to go to HEI, but since I live in North Florida and if I choose surgery, Dr. Bartels is only about 4 hours away.  I have read wonderful things about him on the board.  Gainesville is about 1.5 hours away so that is an option.

[leapyrtwins]

Dr. Bartels is a very good AN doctor.

Jan

[Sue]

But I can tell that my hearing is slowly fading week by week. Makes me wonder if the thing is growing.

This site has been so helpful. Good luck with all of this and know you are not alone.

Barbara

(insert I'm not a doctor here...)  But, I would imagine that the tumor isn't necessarily growing(well, it is, but probably not "rapidly") and more likely it's finally cutting the oxygen off from your nerve and the nerve is getting more damaged that way.  As the tumor becomes more oxygen deprived, the less hearing we have, and that probably amps up the tinnitus, too.  Just found out tinnitus is Latin for "ringing".  So if anyone asks if you know any Latin...there you go.  Hey, it could happen!  

Sue in Vancouver, USA

[Jenn15b]

The episodes are happening more frequently and I have an extremely painful headache on my left side last night.  Maybe I can just noticing everything more now that I am diagnosed. 

[moe]

Jenn,
Yes it is true once you find out about a diagnoses, then the symptoms seem to magically get worse, or more noticeable.

Making the choice IS the hardest part. Radiation/Cyberknife are definitely worth looking into. See what different docs recommend. Very confusing too. Use us as your sounding board. I've heard it helps a lot.
I had no choice with my surgery. Way too much involvement with the brainstem, so translab appproach.

BARB- welcome too. I live near Tacoma, WA- see my sig for surgery specifics. I'm scheduled for more surgery at UW on 13 may for smile restoration. PM me if you need to talk to a "local." Well I'm KIND of a local. Navy family but we are here for good
Best of luck to you too.
Maureen
There is supposed to be a Support Group starting in Tacoma area - will keep you posted

[Jenn15b]

I just spoke to Dr Fayad at HEI, apparently 99% of the time the tumor is located on the balance nerve, where as mine is located on my hearing nerve, if I elected surgery I would lose my hearing completely.  I go see the local doctor here next week and Dr. Fayad advised I should get a hearing test, VNG, and ABR.  He also asked that I send the results back to him.  He believes the tumor is also effecting the balance nerve which would explain my "episodes"  I feel really good about talking to Dr. Fayad, he explained things over the phone clearly and was very nice. 

[moe]

Good that you got good vibes from Dr. Fayad. It is all about going with your gut after you do all your research.

You've got lots of time. No need to rush. Slow growing, benign, you know the speech....

 Hard though when the symptoms are getting worse.

Good luck as you continue your research.
Maureen