Author Topic: How Common Are AN's?  (Read 8840 times)

aj44

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How Common Are AN's?
« on: October 20, 2009, 03:36:48 pm »
Hi. What is the ratio (per a thousand or a million) for people getting AN's? Is it common?
4 to 5cm AN removed on December 2009

Jim Scott

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Re: How Common Are AN's?
« Reply #1 on: October 20, 2009, 04:06:50 pm »
The most common number I've seen is 3,000 annually in the U.S and 1 in 100,000 people, worldwide.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Cheryl R

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Re: How Common Are AN's?
« Reply #2 on: October 20, 2009, 05:05:23 pm »
They are saying at the symposium of 2 in 100,000.           Seems like more as we come across others with them over time and here.
                                                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Larry

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Re: How Common Are AN's?
« Reply #3 on: October 20, 2009, 05:46:43 pm »
Agree with Jim's figure of 1 per 100,000 but that figure will be revised upward in the coming years as more and more are detected. MRI's have only been around for about 15-20 years (roughly) so AN's would bot have been diagnosed as often.

The Stat is far too high coz its a shocking thing to have (personal vent)

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

sgerrard

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Re: How Common Are AN's?
« Reply #4 on: October 20, 2009, 07:49:27 pm »
It is worth emphasizing that like the 3,000 a year in the US that Jim mentioned, the 1 in 100,000 figure is an annual rate. Over a 10 year period, that means 1 in 10,000 end up with one. Over a 50 year period, 1 out of 2000 people will get one diagnosed. So even if you live in a small town, there are likely to be a few over the years.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: How Common Are AN's?
« Reply #5 on: October 20, 2009, 11:44:04 pm »
I don't know what they said at the symposium - spent a lot of my time talking with Lori and Kaybo - and not in sessions  ::)  but I've always heard the 1 in 100,000 static that others have mentioned.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Dan

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Re: How Common Are AN's?
« Reply #6 on: October 21, 2009, 01:23:55 am »
I have also read 1/100,000 and like Steve said over the years there can be more people in your small town.  Where my parents live in a town of 20,000 they know of 3 people with AN`s so I'm the 4th from a small town that we know of.  Of course there could be more.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

ppearl214

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Re: How Common Are AN's?
« Reply #7 on: October 21, 2009, 05:35:34 am »
I don't know what they said at the symposium - spent a lot of my time talking with Lori and Kaybo

yeah, I know! ;)  :-*


I have heard that AN's make up 6% of all brain tumors (benign and malignant).  Not sure if any of the numbers have changed over time, with advances in technology to diagnose them or folks going to their dr's for symptoms related to AN's vs. "oh, I'll be fine, it's just age playing games with my hearing".

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

aj44

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Re: How Common Are AN's?
« Reply #8 on: October 21, 2009, 06:12:20 am »
Cheers for all the replies!  :)

I have heard myself that they range from 1 in every 3,500 people to 5 in one million people.
4 to 5cm AN removed on December 2009

another NY postie

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Re: How Common Are AN's?
« Reply #9 on: October 21, 2009, 06:52:21 am »
I also heard 3000 a year, 1 in 100,000 but I think that these figures are specifically for the US.  I never found a global statistic.  I too think the numbers are increasing.  When I had my surgery recently at House, I spoke with one of the dr. there about this and he said there was an increase that is being tracked.  I agree that it could be better detection due to MRIs but I also think there is an environmental factor too.  I read a pubished study from Australia and Sweden attributing it to cell phones.  Nothing like that has been published in US that I could find.  It would be interesting to see if there are "pockets" of AN in particular states or if it is spread out.  Seems to me like a lot of people are getting them in CA and NY but maybe that is just that we have larger populations.  When I started this journey, I couldn't believe how many people knew someone who had one (for such a rare tumor)
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Kaybo

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Re: How Common Are AN's?
« Reply #10 on: October 21, 2009, 06:56:45 am »
*hijack*

I said from the get go that I was going to meet my "fictitious friends" from on here...

K   ::)
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl R

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Re: How Common Are AN's?
« Reply #11 on: October 21, 2009, 07:01:36 am »
It was a House dr who mentioned the 2 in 100,000 at the symposium and actually said probably so at the one 2 yrs ago.      Just puzzles me why ENTs seem to have little knowledge of them!
                                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mickey

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Re: How Common Are AN's?
« Reply #12 on: October 21, 2009, 08:47:12 am »
I`ve heard that 1 in 100,000 is the ratio. I believe that this number is the number that is detected worldwide . According to some studies if you were to take a brain autopsy of everybody who dies, that number of something detected would be closer to 1 in 100? One of the european journels I was looking thru. Mickey

CHD63

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Re: How Common Are AN's?
« Reply #13 on: October 21, 2009, 05:12:59 pm »
I agree with Cheryl (another NY postie) that I think the number of AN diagnoses is rising significantly because of environmental/style of living factors.  I, for one, feel very strongly that my AN was a delayed result of exposure to radium treatments following a tonsillectomy/adenoidectomy when I was a teenager.  Also, I agree that MRIs are being done so much more frequently today that ANs are being discovered much sooner (smaller) than before, which will skew the statistics for awhile.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: How Common Are AN's?
« Reply #14 on: October 21, 2009, 06:10:08 pm »
Just puzzles me why ENTs seem to have little knowledge of them!

I'm puzzled by this also, Cheryl.  I still remember the phone call from my ENT telling me he had the results of my MRI and that I had "something" in my IAC.  To this day I'm not entirely sure he knew what that "something" was - but I'm forever grateful that he knew enough to refer me to an outstanding neurotologist.

Jan

Note to Phyl - one of the many wonderful things about the symposium was actually meeting my "sisters" - one who is also my partner in crime  ;D  Hopefully in Cincinnati I'll have more time to attend sessions - but I wouldn't miss the socializing for anything in the world.  I can count the number of people I knew with an AN on no hands prior to joining the forum - and IMO - one of the many great things here is being able to interact with others who've shared my same experience.

 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways