Author Topic: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs  (Read 3746 times)

Dan

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I'm visiting my parents in the USA, and they intoduced me to someone in our church that had an AN zapped (GK) 3 years ago.  He's doing good.  I asked him if he had contact with anyone that had had surgery, he said yes there is a lady that had a 4cm AN removed and a man that had a 1.7cm AN removed living in town.  We didn't have very much time to talk but I'm going to try and contact him again.  I hit me after our conversation that ANs are suppose to be pretty rare (somewhere around 1:100 000-1:150 000)  and so how could there be 4 of us living in or from a town with a populatin of only 17 000. There is not a Hospital or Dr. within 120 miles that specializes in ANs.  I'm going to try and meet with them all and find more out but I find this pretty strange. Has anyone heard of something like this before? 

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

Obita

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #1 on: September 04, 2007, 07:35:50 pm »
Hi Dan:

I guess you did find a support group in the USA!! 

That # does sound a bit odd.  Maybe you will be the first to find a common thread.  Could your AN have been around since you lived in your hometown?

I have read that 1 in 100,000 per year is diagnosed and that many show up at autopsy.  I can't remember the
figure if you include ANs found at autopsy.  I am sure someone will know.

Have a good vacation and keep us posted on your support group, Kathy

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

sgerrard

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #2 on: September 04, 2007, 07:55:12 pm »
If you do the math, it is not so odd. 1 in 100,000 per year is the usual approximate number. For a group of 17,000, that is about 1 every 6 years. After 24 years, you would have 4 of them - on average, that is. There will be a city of that size somewhere with twice that many, and another somewhere with half that many. Not so odd, really. About 1 out of every 1000 people wind up with one sometime in their lifetime, although not all of them are ever diagnosed.

Hope you enjoy your visit to the USA.

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.

Dealy

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #3 on: September 05, 2007, 05:52:57 am »
I live in a town that has a population around 20,000. To my knowledge I know of at least 7-maybe 8 people who have had these AN's throughtout the years. Before I knew I had another one because I am an Nf2- I was kidding with my ENT that we must have something in our water. Before I knew it the joke was on me because now I have another one. Go Figure. I am the only one that opted for Radiation. Why do we have a cluster in this area and our town-who knows? Thanks_Ron

Sue

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #4 on: September 05, 2007, 12:05:26 pm »
Okay you math freaks, tell me this....What do you think the percentage of the population of the US has an AN?  I read that about 7% of the population has diabetes (which I am one of >:() and I was wondering what the percentage would be of AN's.  I just thought of that and thought that would be interesting to know. I am math challenged, so wondered if anybody out there has seen that number or can figure that number out!  It must be just a tenth of a percent...but go to it, math geniuses!!

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

nancyann

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #5 on: September 05, 2007, 01:14:30 pm »
Sue:  I LOVE NUMBERS !!!  But since this surgery, I can't think worth ----!!!   And I don't ever want to THINK HARD again !!!!!
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

jb

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #6 on: September 05, 2007, 06:36:20 pm »
Just a guess, but I'd say Steve's lifetime number of 1/1000 has to be multiplied by the median age divided by life expectancy to estimate the current percentage.  Say median age = 40 and life expectancy = 80 to keep it easy.  Thats 1/1000 x 40/80 = 1/2000 or 0.05%.  That's about 8 AN's in a town of 17,000.
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

linnilue

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #7 on: September 05, 2007, 06:46:35 pm »
Well, how does this sound for the numbers.  I live in a town with the population of approx. 40,000 and my radiooncologist "radiates" 50 plus AN's yearly.  That does not account for the microsurgeries or those who go elsewhere.  Now that I'm thinking this through, it's alot, isn't it?
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

marg

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #8 on: September 05, 2007, 06:57:43 pm »
Hi,
    I talked to an audiologist today and he told me in 26 years of  giving hearing tests (and sending the nerve damaged ones for an MRI) he has never had someone with an AN tumor...... his office is in Vancouver, WA .  There are a ton of people there. 
   I  live about 50 miles north of  there and I know 3 other people in my small town who have had AN tumors..... including my next door neighbor (who has had three) and her name is Margaret too !!! how weird is that??

Margaret
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

Sue

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #9 on: September 06, 2007, 01:41:22 am »
Well, you guys are trying...at least the ones who can think! ;D hee hee

I guess when you think how many people get diagnosed with, say, diabetes each week in a medium sized town...it's quite a few people.  There are classes all the time at hospitals, what I call Diabetes University, and they have several a week - daytime and nighttime classes and my class had 20 people in it or so...and this was just one hospital.  Some are repeating the class...so say 10 new patients each week...No way are AN patients being diagnosed in that quantitiy which would be hundreds each month for diabetes (say 6 hospitals x minimum 20 new people each week).  So the point being...I'm not sure what the point is now..I think I have a headache! :D

Anyway, 0.05% sounds good to me. Or bad, depending on your point of view. 

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

satman

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #10 on: September 07, 2007, 10:37:20 am »
just my opinion,i think the reason that more and more are being found,is due to new technology.
my neighbor has 22 yr old daughter,woke up one morning and she had the famous crook-ed
smile.had a cat and found 5.3cm abnormality.anybody got a number for erin brockovich.
kicked my little 8cm buddy to the curb-c ya !

Battyp

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #11 on: September 07, 2007, 11:36:31 pm »
The latest stats were 2 per 100,000 which is attributed to better diagnostic technology. Before people just didn't know and often weren't found until after they had died. (I personally think they all died from very old age! ;D)

Funny once you start talking to people they seem to know someone who had one or a friend of a friend. Still I like to think it's because I was special and have been able to meet the bestest people!

M

leapyrtwins

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Re: What are the Chances, odds? 4 People in one town, Pop. 17 000 with ANs
« Reply #12 on: September 07, 2007, 11:53:21 pm »
Michelle -

I just have to say that I've read a few of your posts tonight and I just LOVE your sense of humor.  I usually log onto this forum when my kids are asleep, the work I dragged home from the office is done, I've just folded multiple loads of laundry, and I'm tired and crabby.  Your posts are like a breath of fresh air and usually provide me with a chuckle.

Thanks so much,

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