small intracannicular ANs - come on in!!

[neuroma_racer]

hello ,
new member to the club, here.
btw . . .
where do i go for my club sandwich 

anyways,
my new member post can be found here.

specifically, mine is 4mm x 7mm, and is completely INTRA cannicular.

just being diagnosed less than a week ago, i am feeling fairly tempest tossed with each new piece of info i read or hear, as to which way to go.

i know ANs are fairly slow growing. some slower than others, and some even vacillate between slow growing, and slower growing.

that being said. i wanted to get some individual histories of members, whose ANs were of similar size at diagnosis.
looking to hear:
 
(1) how long you've been W&Wing,
(2) size at diagnosis,
(3) INTRAcannicular? or EXTRAcannicular?
(4) how many surveillance scans youve had,
(5) and at what intervals,
(6) and how much it grew over those intervals.


thanks,
jesse

[Mickey]

Hi Jesse! You can go back into the W+W forum and you will find alot about whos W+W and what is being done.
As for me I was diognosed going into my third year now. I`m up to yearly MRI`s now so far with everything being stable .12x.06. My main symptoms are tinnitus (which I`ve had for 30 years and a slight high pitched hearing loss). I`m 61 so I`m hoping that my AN has run its course?  I`m keeping my healthy lifestyle.  Take your time do your homework. Wishing you the best, Mickey

[davjack]

Mine is extracan-whatever-you-said. On the outside. I've just joined w&w. I was diagnosed in Sept. 2009, but I know this thing has been in my head for at least 4 years. Mine is 1.3cm

My symptoms are off and on balance issues and some tinnitus.

It is a total emotional roller coaster. You will have good days and bad. Having this thing in my head has changed my entire outlook on life. Good luck.
DJ

[Keeping Up]

Welcome Jesse

I read your intro post as well - so got a bit of the background.  I too am a 38 year old (but only 1 month into it - with four little ones 7, 5, 3 and 2, but all closer to their next age!).  I am also Canadian which makes fo,r I think, a pretty different treatment path (very conservative watch & wait).

1) I have been in watch & wait for 1 year - I too was diagnosed just before xmas last year.  The tumor is purely intracanicular - only symptoms are minor hearing loss (pure tone average of about 30db now across the 500khz, 1000khz and 2000khz) and tinnitus.  Doesn't bother me at all ... I actually sleep better because I sleep on the 'good' ear.  High frequency is the issue.  My word recognition remains very good at 60db (96%) but only 76% at 50db due to the high frequency loss.
2) size at diagnosis was 6mm x 8mm (or whatever my footnote suggest - to be honest, I have forgotten).  I have had one subsequent MRI at 6 months (last May) - unchanged.  My next MRI is January 29 - so very soon. 
3) purely intracanicular.  According to my ENT (practice at the large research centres in Toronto), I am not even to the starting line for measurement.  According to these doctors (again probably very different compared to many of their US peers), the tumor measurements usually only start once you get to extracanicular.  I think I am on the cusp though.  If it grows, I will get to extracanicular.
4 and 5) Bit of a repeat - two scans - original diagnosis and one at 6 months.  My next scan is January 29th - 8 month interval.  The ENT would have gone for 12 months, I wanted the life line for comfort. 
6) No growth

If you are a research reading type and have a curiousity about the conservative mgmt research done by the doctor I think I now have (whole other post ... lost my really nice ENT back to Ireland - got his senior researching boss) - send me a PM, and I will forward on.  The premise of the two pieces of research is small AN population (not necessarily intracanicular - 170 patients, again if I remember correctly) over a 10 year period, only 30% grew. (none of the radiation type projected crap, population was tracked for 10 years) The other tumors  were stable and required no treatment.  For the 30% (round terms) who did require treatement (surgery or radiation), the hearing loss (SSD) and/or facial outcome were no different compared to the population who treated immediately.  Obviously, always a personal decision.  Outside of growth or persistent dizzy spells (intermittent at this point), I plan to do nothing other than follow-up MRIs.  I am hoping for 10+ years and maybe never before I need any treatement.  We shall see if the odds playout for me.

Good luck and sorry to have to welcome you.

Ann

[neuroma_racer]

*removed quote as spam links were still noted, working. Phyl*

wtf?

[ppearl214]

*removed quote as spam links were still noted, working. Phyl*

wtf?

Pls ignore the person behind the curtain (post was a spam... now deleted).

All set Racer! Carry on back on topic!

Phyl

[Lynn Mc]

Thanks Phil.  Wonder about that.

Jesse,

I was W&W for a year.  Although a sm AN it is consistently growing.  My MRI's were 6 MO apart with growth spurts in between.  Dr.'s Barker & Mckenna believe it should come out before it does any more damage (am presently a little off balance, tinnitus & will be SSD).  Am feeling at peace with my decision. 

Lynn