Lots of People with Acoustic Neuromas

[Crystal]

So glad to hear about your recovery Suzy.  I go in on Dec. 7th.  I am trying to focus on positive stories.

We have three people in the company I work for inlcuding me with AN's.  Weird huh?

1 had surgery twice - not sure of her situation now as she has left the company.
1 had surgery once and gamma knife the second time, now remains stable after 2 years.  She has been very helpful to me in sharing her experience.
I had Cyberknife in 04 and will now must have surgery in December given mine continues to grow.

...And 2 people I work with each have a friend's that had an AN, one from Texas, one from my town.

...And, when I was having Cyberknife treatment there was another person from the small town of Tacoma, where I am from, at Stanford having the CK treatment at the same time.

I have noticed alot of people having this thing treated twice.  Doc told me some have more stubborn(aggressive) tumors than others.  I haven't seen anybody talk about doing it a third time. (whew!)

I am wondering if "they" need to update their stats... and if there might be something environmental that may contribute to a gene weakness...  like sitting in front of a computer almost every day for 24 years like I have.

[Sailing]

Hi.  I am considering surgery too, with the same doctor.  My AN is about the same size as yours, 1 cm. I will be 51 in a few days, pretty healthy.  I found out about this AN after a car accident, I toolk an MRI an they discovered it.  That was in 2004.   I do not have strong headaches or otyher symptoms, but since the AN grew from 0.8 mm. to 1 cm in the last year, it was suggested to me that I should do something about it.  Itseems that surgery is better than radiation for someone who is not too old.  I would like to talk to others who are in a similar situation.  Thanks.

[Mark]

I was 44 when I was treated and there are numerous folks who have had GK or CK on this board who were treated in their 30's and 40's. 51 is certainly not an age which is too young for radiosurgery if you want to consider that option.

Mark

[eggroll]

...I have a metallic taste that didn't occur until 1 month post-surgery...

I'm dealing with that right now; it's totally ruining food for me, nothing tastes right.  I'm hoping it's due to the anti-inflammatory steroid (Dexamethasone) which I am no longer taking (finished the last one this AM). 

Glad to hear you're doing well.  I'm looking forward to the day when I can move my head without taking the whole house with it.

[Obita]

Hi eggroll:

You sound great!!  The taste thing goes away - it just takes time.  I got so used to chewing on my good side that I still find myself doing it!!

I hope the house stays put soon for you.  Its just another of the unpleasant, temporary things we have to go through until our good side takes over.

Kathy

[nancyann]

Hey - I've still got the metallic taste & I'm almost 9 months out ( geez, time is flying by);
        The metal taste seems to be getting worse for me,
        I wonder if it's because of the facial paralysis....
         Does it get worse before it gets better? 
         Or am I doomed with this ? 
         Food hardly has any taste anymore (except for vegetables);
          I also don't have any appetite- I don't care much about eating anymore, which is a good thing (weight wise)
         until I get a headache & think, 'I haven't eaten for about 12 hours, geuss I'm hungry......'

[pearchica]

Great News! Glad things are getting some what back to normal- or the new normal!  Take care, Annie