Author Topic: How common are AN tumors in young adults (age 18-25)?  (Read 12992 times)

zontar

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How common are AN tumors in young adults (age 18-25)?
« on: November 13, 2013, 10:49:15 am »
Simple question. I only ask this because I have unilateral hearing loss (feels like some type of blockage) together with a maddening low-pitch "hum" tinnitus. This all came on rather suddenly around Oct 31 and did not stop since (with a three day exception), although I had a single day back in Sep when it happened (and disappeared).

I'm going to the doctor soon if it doesn't let up and I'm kind of terrified at the prospect of having one; maybe seeing how rare it is in my age group (age 23) would probably allay my fears a bit when going for an MRI. Can't seem to find any statistics on this one.

Trippy

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #1 on: November 13, 2013, 01:18:05 pm »
About 1 in 100,000 per year, in the U.S. that amounts to about 3,000 cases a year.  So your risk of developing one in a lifetime is roughly 1 in 1,000.   Off the top of my head, most AN's are diagnosed after the age of 30 with most of them diagnosed around middle age, you would be on the early end of the spectrum.  It does happen but in your age range its rare within an already rare condition.

A lot of things can cause hearing loss and fullness so odds are you may not have a tumor.  Though since you are having symptoms I would get them checked out with a doctor ASAP, maybe an ENT.  They might prescribe you some steroids in an effort to regain your hearing (at least temporarily).  The only definitive way to test for a tumor is an MRI.

Edit: Stat correction..brain fog  :(
« Last Edit: November 13, 2013, 02:21:01 pm by foolthrottle »

arizonajack

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #2 on: November 13, 2013, 05:36:52 pm »
We have a few younger people that post here but mostly not.

I found many sources that anecdotally indicate that most ANs occur between the ages of 30 to 60.

I found one source that studied 500 AN patients and found that 50% of the patients were between age 41 to 60 but only 15% were less than 30.

http://archotol.jamanetwork.com/article.aspx?articleid=606946

I suggest you start by getting some treatment for your symptoms ASAP and see if it helps. If it doesn't help over a period of a few weeks, get an MRI with contrast.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

zontar

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #3 on: November 18, 2013, 06:38:30 pm »
Thanks for this entire community. It makes me feel a lot better if the worst happens and I do have an AN. I have gotten the courage to book a GP appointment and it is this Thursday at 10:30, obviously will keep everyone informed.

Has anyone with an AN had low-pitch rumbling "train in the distance" tinnitus that varied in volume almost every couple of days? Some days I did not hear it at all, but on some days (like today) it is LOUD and I can hear it even over the air purifier. I'm really hoping it's just ear wax but we shall see.

arizonajack

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #4 on: November 19, 2013, 02:33:51 pm »
Has anyone with an AN had low-pitch rumbling "train in the distance" tinnitus that varied in volume almost every couple of days? Some days I did not hear it at all, but on some days (like today) it is LOUD and I can hear it even over the air purifier. I'm really hoping it's just ear wax but we shall see.

I had continuous tinnitus in my AN ear for about a year from the time my symptoms started. The sounds changed from time to time but were barely perceptible and easy to ignore. Since then I've had infrequent tinnitus that usually sounds like Morse Code but is also barely perceptible and easily ignored.

The tinnitus that really annoys me I've had for about 10 years in my good ear. It's the constant hissing of a tire deflating 24/7. It's not very loud but noticeable when I'm in quiet surroundings.

So, you see, tinnitus can be all over the map and might or might not be from an AN.

Clear as mud.  ;D
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Imcamodchick88

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #5 on: November 21, 2013, 02:02:32 am »
I have had tinnitus from the time my symptoms started until this very day. It's louder when the situation's loud, or when it's really quiet. Go figure, I can't win.

It's also really loud when I really need to concentrate haha. Too bad no one believes me on that one.

2.8-cm AN removed by translab on 12/23/11 at UTSW
Dr. Issacson and Dr. Mickey

zontar

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #6 on: November 21, 2013, 01:07:14 pm »
I saw the GP today who diagnosed as Eustachian tube dysfunction and was prescribed a nasal spray. Coincidentally, my symptoms have completely let up again this morning (no tinnitus or hearing loss). So we're gonna just go with the spray and see what happens for now, but for now the GP isn't immediately concerned about anything serious. Hopefully this takes care of it!

hruss

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #7 on: November 29, 2013, 11:24:04 pm »
Zontar, I am happy to hear that your doctor is not concerned! Hopefully your symptoms will be alleviated and no need to go further down the road.
Answering your initial question, ANs are more rare for a person under the age of 40 (acc to my observations). I am one of those who had her first surgery at the age of 24 though.

Take care,
Hrissy

4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

chopper

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #8 on: January 24, 2014, 12:43:47 pm »
Bringing this thread back with a little additional info -

Zontar -

What you described almost mirrors my experience in my early/mid 20's - Temporary hearing loss, increased tinnitus, trip to an ENT resulted in steroids and a diag of nothing to worry about.

Fast forward a couple of years (like, 2, if that),  during a pre-employment medical battery that thankfully involved a hearing test, which showed there was a profound loss of hearing, which raised doc suspicions, led to an MRI, which then led to well...here lol.

If you can, get an MRI just so you know for sure.  Just sayin...
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

michellef08

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #9 on: February 02, 2015, 01:39:20 pm »
Don't know the statistics but I was 27 when I was diagnosed with my AN! It is obviously rare (just like the tumor), but I am one of the younger ones!

Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

ANGuy

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #10 on: February 02, 2015, 02:43:59 pm »
I saw the GP today who diagnosed as Eustachian tube dysfunction and was prescribed a nasal spray. Coincidentally, my symptoms have completely let up again this morning (no tinnitus or hearing loss). So we're gonna just go with the spray and see what happens for now, but for now the GP isn't immediately concerned about anything serious. Hopefully this takes care of it!

I know this thread is kind of old, and the OP hopefully has his situation straightened out.  I would like to make the point that the OP is being too dismissive of the possibility of having an AN.  He is young, I would have been the same way.  In fact, when I was 38 I was in the same boast as the OP and did the SAME thing, I wrote my symptoms off as E-tube dysfunction.

It wasn't until years later, when my symptoms were too severe to be brushed off so easily, that I went to an ENT.  The hearing test is the first clue to whether these symptoms are from E-tube dysfunction.  An ENT should tell you what kind of hearing loss you have.  If it is sensorineural, it aint form E-tube problems.  We don't know what type of hearing loss the OP had, he didn't mention it and nobody asked.

I am posting this to inform anyone who comes across this thread with similar symptoms, get a hearing test from an ENT and ask specifically if you have sensorineural hearing loss.  Sensorineural hearing loss can only come from inner-ear or nerve dysfunction.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

farcraw98

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #11 on: February 06, 2015, 08:51:37 am »
My wife (32) had an AN tumor ~25mm, so it was there for about 10 years.

ericabrian28

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #12 on: May 04, 2015, 08:34:37 am »
I am a 26 year old female who had surgery March 25th to remove my tumor. I had genetic testing and everything because I am so young. That was negative.

suethompson

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #13 on: May 05, 2015, 08:37:14 am »
My great niece Berkley, 16,  had a 5 cm removed December 16, 2014 at Medical City Dallas. Presented as declining hearing in AN ear. Still recovering; SSD; facial paralysis that we still are optimistic will resolve; not returning to school until fall.  She also had generic testing & it was negative.  So far have not heard of an AN at 16 or younger. Certainly not one so large which indicates it had been there a long time.

brianharte

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Re: How common are AN tumors in young adults (age 18-25)?
« Reply #14 on: May 05, 2015, 07:15:27 pm »
found mine at age 30. 5cm. doctors figure it was growing for 15 years.