ANA Discussion Forum

General Category => Inquiries => Topic started by: tenai98 on September 10, 2008, 02:23:50 pm

Title: Rare or what??
Post by: tenai98 on September 10, 2008, 02:23:50 pm
Almost all of the websites I visit state that AN is rare....HMMMM...To me it looks like it is a common situation.  There are so many of us in the forum. 
Title: Re: Rare or what??
Post by: Debbi on September 10, 2008, 02:33:51 pm
I believe the statistic is about 1 out of 100,000 people, which makes it pretty rare.  Or, as I like to think of it (and myself) - elite!

Debbi
Title: Re: Rare or what??
Post by: LADavid on September 10, 2008, 03:01:01 pm
I seem to recall that only 3,500 people in the United States are diagnosed with ANs annually.  We are the elite few.
Title: Re: Rare or what??
Post by: hruss on September 10, 2008, 03:07:05 pm
  :D  :D  :D

Like the elite title to call us!!

Yep, as far as i read it appears once in 100 000 - so it is considered rare!

Hrissy  :D
Title: Re: Rare or what??
Post by: 28Lisa on September 10, 2008, 03:36:47 pm
didnt know that 8)
Title: Re: Rare or what??
Post by: tenai98 on September 10, 2008, 03:37:06 pm
I always believe that God never gives us more then we can handle...so we are a special group of people...lol...
Title: Re: Rare or what??
Post by: saralynn143 on September 10, 2008, 05:05:35 pm
This is from the main site:

How often do Acoustic Neuromas occur?
Most recent publications suggest that the incidence of acoustic neuromas is rising. This is because of advances in MRI scanning both on incidental scans and for patients experiencing symptoms. Studies in Denmark published in 2004 show the incidence is 17.4 per million or close to 2 persons per 100,000. Most acoustic neuromas are diagnosed in patients between the ages of 30 and 60.

The incidence of hemifacial spasm, which CROOKEDSMILE and I have, is estimated at .7 to .8 per 100,000. It seems to me that is a low estimate as wel, but it's published a lot of places. Lots of these rare neurological conditions floating around, unfortunately.

Sara
Title: Re: Rare or what??
Post by: calimama on September 10, 2008, 05:22:05 pm
imagine how surprised i was when i found out that my husband's best friend's sister had radiation to treat her AN a few years back!
Title: Re: Rare or what??
Post by: Nancy Drew on September 10, 2008, 05:40:06 pm
Sometimes I wonder if the 1 in 100,000 is off a bit.  In my group of friends, four people know of someone who has an AN.  That six degrees thing . . .  Also, Maureen, on this board has an old college roommate who also has an AN.  Freaky!!!  I still think they are rare.  Nancy
Title: Re: Rare or what??
Post by: Raven on September 10, 2008, 05:58:15 pm
1 per 100,000 is what I've always seen............oh and only 5% of those have bilatteral ANs, trust me on that one.

John
Title: Re: Rare or what??
Post by: sgerrard on September 10, 2008, 08:02:48 pm
A lot of people don't get the math on this - I guess it is a matter of understanding a statistic.  ;)

The usually given rate is 1 per 100,000 per year. (It may be higher now, as noted in the Denmark study).

What people miss is that it also means 1 per 10,000 over a ten year period, and 1 per 2000 over a fifty year period.

It adds up over time.

Steve
Title: Re: Rare or what??
Post by: wendysig on September 11, 2008, 06:29:35 am
Even if ANs are not quite as rare as it was first thought, they are certainly not usual - we are a unique group.

Wendy
Title: Re: Rare or what??
Post by: mema on September 11, 2008, 07:33:56 am
This isn't meant as a boo-hoo, but comical to my hubby and I.     At age 50 my hubbys colon ruptured.  No diverticuli or anything.  All the surgeons agreed  it was bad luck, a 1 in a million thing, considering  his age and no problems.  Fast forward at age 57, my acoustic neuroma, and brain spasms.  Rare to get brain spasms.  They still can't figure that one out either.  At age 59 my hubby gets transient global amnesia.  Docs say its a rare thing to happen.  I now for 9 weeks have gone to three specialist trying to find out my newest lower abdomen problem.  Got them all puzzled.  Rare seems to be our  M.O.  I hope you laugh at this, as we do.

P.S.  We  were on well water,  so thats our big joke in the family.  It was the water!



mema
Title: Re: Rare or what??
Post by: al on September 11, 2008, 10:57:13 am
As rare as they say it is, what are the odds of 2 close friends both having it?  My girlfriend and I both had it, hers left ear and mine right ear.  It certainly helped when I had to go thru it all. 
Title: Re: Rare or what??
Post by: jazzfunkanne on September 11, 2008, 11:14:39 am
alot of people have AN and dont know about it so that would take the % up abit. what is a brain spasm?
Title: Re: Rare or what??
Post by: LADavid on September 11, 2008, 11:36:59 am
Jazzfunkanne -- I believe you are a Scot, correct?  And you say there a lot of ANs -- in Scotland?  Hmmm.  Could be that genetic link.
Title: Re: Rare or what??
Post by: mindyandy on September 11, 2008, 11:44:41 am
Strange....whenever I go see a new doctor and they ask about my history & I write down AN....they always ask....HOW DID YOU FIND THAT? Like its very surprising that I know I have an AN?
STRANGE!!!!
Title: Re: Rare or what??
Post by: jazzfunkanne on September 11, 2008, 12:04:14 pm
Hi Daivd, yes i am from scotland, my consultant and his team see over 300 patients a year and that is Glasgow only.
Title: Re: Rare or what??
Post by: mema on September 11, 2008, 12:26:02 pm
Jazzfunkanne,

My brain spasms are a feeling of movement inside my head.  Of lately it feels like a minature roller coaster in my head.  My neuro-onycologist referred to nerve damage at one time, that I have a super sensitivity to things that might not bother someone else.


mema
Title: Re: Rare or what??
Post by: Jim Scott on September 11, 2008, 01:36:36 pm
Acoustic neuroma is relatively rare, whether its 1 or even 2 persons diagnosed out of every 100,000.  To put this in some perspective, American Cancer Society statistics show 126 women in every 100,000 will develop breast cancer this year.  59 in every 100,000 (men & women) will develop colon cancer this year.  6 of every 100,000 (men & women) will develop brain cancer this year. 

I don't believe you can make a realistic judgment about the incidences of acoustic neuroma in the general population based on the number of people posting here.  This will always be skewed due to the fact that this a site specifically dedicated to supporting AN patients.  I'm sure that other sites dedicated to specific conditions (i.e. cancer) would give the appearance of that particular medical condition being more prevalent than it actually is.  Anyone who happens to know more than one person with an acoustic neuroma may be somewhat unusual but it doesn't make the condition any less rare.  I agree that more frequent use of the MRI scanner is likely 'discovering' more AN's, hence the 2% statistic from Denmark.  I'm sure there may be more than 1 or 2 ANs out of every 100,000 people but unless ANs are found in triple (or more) their current number in the general population, they will still be considered rare.

Lucky us.

Jim
Title: Re: Rare or what??
Post by: ppearl214 on September 11, 2008, 03:07:37 pm
ANother fun fact.... AN's make up approx 6% of all brain tumor diagnoses..... (incl other benign.. and malignant tumors... I believe Gliomas are the #1 kind of brain tumor).

I like being rare. It just makes me speshal.

Yep, An'ers are rare... go figure.
Phyl
Title: Re: Rare or what??
Post by: LADavid on September 11, 2008, 04:02:23 pm
OK, based on what Jazzfunkanne said that there are 300 patients a year in Glasgow and Glasgow has a population of about 2 million, if my math is correct, that would mean that the incidence of an AN in Glasgow is 1 in about 6,600 compared to this country at 1 in 100,000.  Now I realize there are a lot of variables and aberations, but going back to what I noticed before, there seems to be a lot of Scot and Scot/Irish folks on this Forum.  It seems odd to me that there is such a wide disparity between Glasgow, Scotland and the United States.  Of course I realize that many ANs probably go undetected in less medically sophisticated rural areas -- especially in lower income groups -- as compared to city areas -- but 6,600 compared to 100,000 is a wide range.  Now if my Algebra is correct (which it may not be since I floundered around in Algebra I most of my collegiate career) using the same proportion in Glasgow, there would be 45,000 ANs in the United States every year not 3000.  Why?
Title: Re: Rare or what??
Post by: saralynn143 on September 11, 2008, 04:37:50 pm
David, the 300 people treated in Glasgow may not all be from Glasgow. It may just be the best place to go for treatment.

Sara
Title: Re: Rare or what??
Post by: LADavid on September 11, 2008, 05:00:53 pm
Very true.  But Scotland's population is just 5 million and there is another metro area in Edinbergh.  I like looking into statistcs so I've got a wee project.  Jazzfunkanne, do you know how many ANs are diagnosed annually in all of Scotland -- or in Edinbergh?
Title: Re: Rare or what??
Post by: LADavid on September 11, 2008, 05:16:35 pm
OK, I just did some calculations.  Even if all the Scotland ANers went to only Glasgow annually for treatment, it would still represent 18,000 annually in this country at the same proportion.  Or 1 in every 16,000 in Scotland compared to 1 in every 100,000 here.
Title: Re: Rare or what??
Post by: saralynn143 on September 11, 2008, 05:25:29 pm
We also need to know how many are newly diagnosed,and how many are follow-ups that were diagnosed in an earlier year. "Treated" could mean either.

Not to say that 1 in 100,000 isn't a low estimate, or there aren't more ANs in Scotland. Numbers and statistics are just hard to pin down.

Sara
Title: Re: Rare or what??
Post by: Kaybo on September 11, 2008, 06:24:38 pm
Ate there a lot of fish hatcheries there??   ???

K
Title: Re: Rare or what??
Post by: saralynn143 on September 11, 2008, 07:53:48 pm
Cell phone towers?
Title: Re: Rare or what??
Post by: Kaybo on September 11, 2008, 08:15:14 pm
I meant "are"!!!!!!!!!!   ;D

K
Title: Re: Rare or what??
Post by: jazzfunkanne on September 12, 2008, 03:36:26 am
Hi David am not sure how many patients there are in scotland, the other citys for treatment are Aberdeen , Edinburgh and Inverness, Glasgow takes in the West of Scotland. I will ask my consulant next month when i see him if he knows the figure for scotland. I was interested in your Scot/Irish theory i am half scots half irish .
Title: Re: Rare or what??
Post by: Omaschwannoma on September 12, 2008, 06:56:16 am
Are these stats in the US coming from people treated or diagnosed?  In any case what about those that come from other countries here to be treated, are they counted as treated or diagnosed?  Seems the docs can answer this better, but I commend you David for pushing the pencil. Numbers have always been challenging for me. 
Title: Re: Rare or what??
Post by: Nancy Drew on September 12, 2008, 11:30:21 am
Not to get into the stats thing, but I sure don't see any fund raisers for ANs around here in my part of the country.  Every time you turn around there is a 5k run or something to raise funds for medical causes, but I haven't seen any for ANs.  So, they must be rare.   Nancy
Title: Re: Rare or what??
Post by: LADavid on September 12, 2008, 01:11:53 pm
Phyl?  Are there any efforts outside the ANA to raise funds for research or support?  Maybe we should do our own -- the 5K Stagger and Wobble.  Of course I'm sort of seeing something like the episode of The Office where Michael organizes a 5K to benefit a woman he hit with his car.
Title: Re: Rare or what??
Post by: calimama on September 12, 2008, 01:16:41 pm
I have scotish background on my father's side (his grandparents were from there and came to Canada).

Title: Re: Rare or what??
Post by: Nancy Drew on September 12, 2008, 01:26:07 pm
Cute remark, LADavid!!! ;D ;D ;D  Nancy
Title: Re: Rare or what??
Post by: Jim Scott on September 12, 2008, 01:26:40 pm
The statistics are interesting but they can be quite misleading, or as Mark Twain wrote (in 1907):  Figures often beguile me, particularly when I have the duty of arranging of them myself; in which case the remark attributed to (Benjamin ) Disraeli* would often apply with justice and force: "There are three kinds of lies: lies, damned lies and statistics."

I have no scientific training and am not a doctor but I've long discounted externals - such as cell phones - as the cause of acoustic neuromas.  I suspect they may be genetic but they are not passed on from generation to generation, which makes that explanation a bit problematic.  They are definitely anomalous and as such, may not have a genetic base, such as ethnicity.  I also doubt geographical location is the culprit.  If it were, that would seem to verify external influences as the root cause of the mutation of the Schwann cells that form myelin, the base of acoustic neuromas. 

I won't argue against theories and speculation as I have only more of the same to offer.  I just don't see the 'Aha! moment' anywhere near.  That acoustic neuromas are rare is evidenced, as Nancy Drew noted, by the (unfortunate) lack of attention paid to them by the public.  ANs receive little research money and less publicity.  Like it or not folks, we're 'unique'.  :)

Jim



19th century British Prime Minister 
Title: Re: Rare or what??
Post by: saralynn143 on September 12, 2008, 02:30:17 pm
Jim, just for the record, the cell phone tower comment was tongue-in-cheek. (On my paralyzed side, that's why it was hard to see.)

Sara