What are your criteria for moving from watch and wait to a procedure?

[BlueSky]

Just wanting to know what other peoples thought processes are about this.

[MDemisay]

Bluesky,

Hmm......Good question! For me it was different it was a list of things that I completely ignored : a fall in a shower in 1995 breaking 3 ribs, in the shower shortly thereafter I felt a fullness in my ear which was improperly diagnosed as swimmers ear and I thought that during the 80's and 90's I had spent to close to speakers at rock concerts, once when my wife and daughter thought that it wasn't tolerable anymore I got tested for a hearing aid which I got without the proper test, later when I lost it I fell and had a radial fracture of my right arm, after the painful breaking over the years of all my fingers on my right hand at least twice, (it must be noted here that I have a right sided weakness from two strokes in 1970 and 1974), then finally in 2011 while away in Ireland with my family I broke my right arm again and had to have titanium put in my  right arm.

Does admitting all of this make me fell foolish? yes, but it all starts with symptoms that something isn't quite right? When you look back on my history with falls and fullness in the ear, I was ignoring what to you folks would seem rather obvious.

The fact that I had had a brain operation (1974) before made it seem ridiculous to consider that anything was happening to another region of my brain.


So people that is why I keep telling you "listen" to your body it maybe trying to clue you in on when you add it all up. Get checked regularly by your MD at least yearly. Go even if you don't want to!
 

It is a miracle that I am here so many years later to tell you this, but I am DON'T IGNORE YOUR SYMPTOMS please!  I had a large neuroma 3.1 CM I didn't listen to 13 Neurosurgeons! Thank goodness, I finally listened... Don't wait have it out while it is small!

Bluesky, aren't you glad that you asked?

Mike

[Chances3]

Hi BlueSky,

I would say - before it effects your hearing or if it is impacting the quality of your life and health.

[alabamajane]

I agree with Mike and Chances...
Listen to your body and the symptoms and definitely if you think either is "sending " a signal,, take heed..I waited three yrs from diagnosis to surgery and wish I had gone on earlier.. my symptoms progressed and the tumor was pressing hard on the brain stem so watch carefully,,, best of luck,, Jane

[JWW]

My criteria to move from watch and wait: I thought my hearing loss was in my R ear but the AN is in my L. ear! Confirmed diagnosed with an MRI on March 19th, 2012 by chance: 1cm x 6mm x ?

My audiograms show excellent hearing but my allergies get in the way. My right ear has been extra full and aches. I saw the regular ENT. He explained, "think of my R. ear (good ear) as my ONLY kidney! He said, I will eventually lose my hearing in the left ear."

I have been concerned about taking Dexadron (steroids) after treatment but the ENT said, "take them!" He doesn't like to use steroids much but saves them for the "big guns!" He said, "my ear is about to be hit with a grenade...the big guns!"

I am going thru thru the work-up to have SRS the week of July of July 23rd. I'm anxious. I hope my hearing is saved along with everything else. The lowest dose of SRS (12.5grays) is supposed to be = to FSR of 40-50grays). We will see.

JW

[Bonnie B.]

Hi Blue Sky,
I noticed a hearing loss in my left ear at least l5 years ago and just thought it was from loud noises.  I finally went to an ENT five years ago and was misdiagnosed.  It wasn't until January of this year that my primary care doctor sent me to another ENT.   I had the MRI and an AN and a meningioma were discovered.  By this time, it was too late to save my hearing.   I then studied all of my options and went with GK at Yale New Haven Hospital in March.     Don't wait too long to decide what you want to do.  Study all of your options and, along with your doctors, you can make an informed decision.

Good luck,
Bonnie

[arizonajack]

My decision will be based on growth rate.

The hearing on the right side is gone.

April 2012 MRI diagnosed 3mm x 4mm by 9mm.

Next MRI October 2012.

Pretty sure I'd opt for radiation early on.

I'm 65 and wouldn't want to be having surgery at a more advanced age.

[nancyann]

If my tumor was smaller, I'd have gone radiation, no hesitation.

[Mickey]

I`ve been W+W for 5 years now. I feel good and would be happy to gracefully grow old and take whatever I have with me. I look at my yearly MRI as my reference point. If we say "stable" there is nothing for me to think about. Best wishes, Mickey

[G_Man]

Bluesky
   I'm basically in the same camp with my good buddy Mickey.  My tumor is small and my hearing loss began happening a long time ago.  I've lost about 55db which is a lot.  That tells me that surgery or radiation isn't saving any of my hearing.  Now it's just watching to see if I have any SERIOUS issues coming up.  Right now I have some motion issues and have had some bouts of nausea.  If this gets to an unbearable level then I'll have to make a decision.  So it depends on your situation.  Everyone is different.  If your tumor is small you probably have time.
Good luck. 
Glen

[kedge]

Bluesky I'm in the same boat.  I think mine is on the bigger side (3.1cm x 1.8cm) and I'm only 44 with 3 kids.  hearing is already severely lessened, but I don't want to get any more of the same symptoms.  My doc says he sees no problem in waiting 6 mos. for another MRI, but I know I'm going to worry that whole time.  Also, they say get it out earlier rather than later.  I just don't know what the criteria is either.

[BlueSky]

Hi Kedge,
My AN is smaller, 6mm right now but it is starting to cause me problems (hearing loss, tinnitus, some balance issues) so I have decided when I get this thing treated I want to have surgery so I have started getting second opinions from the surgical teams I am considering. You might want to do the same thing, I know many people on here have consulted with multiple doctors until they found the one they were comfortable with treating them. Their opinions might help you decide if you should wait or not.

[kedge]

since reading yesterday a good bit on here, i am definetly moving in that direction.  i was almost at the point where i just thought it was nothing much to worry about.  now i know it isn't the worst thing that it could be,  , but it seems that I could do to be a bit more proactive about getting more information.  Thank you to everyone for taking time to share stories and give opinions.

[millie]

You can ask your ENT the location of the closest and best  treatment center for acoustic neuroma.
Get the US News/World Report   report  on the best hospitals in the U.S. for 2012.  I believe they also list info on the ones with the best Neurosurgery/Radiooncology Departments.  Find the best ones near you.  Call for appointments.
Johns Hopkins gives free opinions if you mail them your written reports of your MRI's.  Columbia is ranked very highly and so is NYU.  Mass General is supposed to be the best, I think, but I don't believe the doctors  at these last three hospitals there review your records for free like Johns Hopkins or House does.
I am still learning all this.

[MaryCPereira]

I find myself torn with this as well. I'm recently diagnosed, and still pretty young. At first I wanted them to just take it out so I can get on with my life. I am sick of the headaches, balances issues, ear pain, ringing, etc. But, the doctor said that the surgery won't do anything to get rid of those, and that it could just make them all worse permanently, and that I'll be deaf in one ear instantly, versus waiting and having the symptoms, but still maintaining some hearing.

Somedays I still want it gone. Just for piece of mind maybe. To get the recovery over and done while I'm still young and otherwise healthy. But, as of right now, I'm still waiting. I guess until maybe the doctor says its go time? Or I just get so fed up that I call and make the appt haha.