Author Topic: Intracanalicular ANs poll  (Read 1231 times)

DodgeAU

  • Newbie
  • *
  • Posts: 2
Re: Intracanalicular ANs poll
« Reply #15 on: September 08, 2018, 07:58:43 pm »
Hello,

46yo male here working in Melbourne AU, recently diagnosed last month with IAC small 6x4x4 mm AN on my left ear.  Had gradual hearing loss over the last 10 years but Jan 2018 felt 50% hearing loss and tinnitus, hence discovered this little bugger.

Went to Neurologist this week and put me on WW for 6 months then MRI on March 2019.

No balance issues just severe hearing loss and mild tinnitus on AN ear. Have issue on identifying where the sound coming from. My colleague on my left side calling my name but I looked on my right side :)

Are you guys doing anything else while on wait and watch? I want to preserve my remaining hearing on left if possible. Just in case my AN grow I leaning towards GK treatment.

Cityview

  • Full Member
  • ***
  • Posts: 110
Re: Intracanalicular ANs poll
« Reply #16 on: September 09, 2018, 12:24:20 pm »
Dodge AU

I've been on watch and wait for close to five years with no change in hearing status yet.

I haven't been doing this all along, but for the last nine months or so I've been taking 81mg aspirin.

There is some research suggestive that aspirin may inhibit growth.

I figure while I'm waiting why not give it a try.

I don't think aspirin will save hearing though. There's nothing in the research about that.

I was told radiation would or could rapidly degrade hearing but that may have been advice specific to my case.

Surgery can cause sudden total loss of one-sided hearing so that's a risk too.

In general I'm happy with how I'm feeling so I wouldn't risk that for hearing alone.

After reading so many posts there doesn't seem to be much consistency regarding hearing loss, tumor size, etc. Some people have large tumors with no hearing loss and others have small tumors with a lot of hearing loss so it's hard to advise.

Good luck
« Last Edit: September 09, 2018, 06:31:22 pm by Cityview »
Small AN
Successful watch and wait for over 4 years!

DodgeAU

  • Newbie
  • *
  • Posts: 2
Re: Intracanalicular ANs poll
« Reply #17 on: September 14, 2018, 11:41:10 pm »
Cityview I hope the aspirin do wonders for many and stop the growth of AN. I will ask my specialist about it.
Are you doing scan every year?

Do you know if AN shrinks itself later in life?

For me it's an anxious first 6 month wait.




« Last Edit: September 15, 2018, 04:26:55 am by DodgeAU »

Cityview

  • Full Member
  • ***
  • Posts: 110
Re: Intracanalicular ANs poll
« Reply #18 on: September 15, 2018, 04:04:26 pm »
DodgeAU

I can appreciate the anxiety surrounding the diagnosis and feeling like it's hard to wait the 6 months. I've had a lot of stress and anxiety about the diagnosis as well. In general I don't have anxiety but just dealing with the diagnosis and figuring out what, if anything, to do about it. So I sympathize. Some positive things to think about: the tumor may be exactly the same size in six months or it may grow only slightly. One bit of advice, I wouldn't panic if the next scan shows it to be a little bigger. Sometimes when they interpret the scans over years, the sizes can go up and down because of the way that MRIs work.  The imaging is done in "slices" so that can make it difficult to measure, especially smaller tumors.

I do get yearly scans. In some cases I have had more than one per year. I think the first few scans after diagnosis are spaced about six months apart to determine the rate of growth. As I was told, they had no way to know, at the beginning, if the tumor had grown in two months or many years.

I have no information about whether or not they shrink when people get older.

Here is some information about the aspirin regimen. It is not proven yet, but they have found some preliminary, promising evidence so now they are officially doing research.

https://www.sciencedaily.com/releases/2014/01/140124110705.htm

Good Luck with everything and take care.
« Last Edit: September 15, 2018, 04:11:06 pm by Cityview »
Small AN
Successful watch and wait for over 4 years!

 


anything
anything