Author Topic: Rare or what??  (Read 9677 times)

tenai98

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Rare or what??
« 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. 
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Debbi

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Re: Rare or what??
« Reply #1 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
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

LADavid

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Re: Rare or what??
« Reply #2 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.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

hruss

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Re: Rare or what??
« Reply #3 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
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

28Lisa

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Re: Rare or what??
« Reply #4 on: September 10, 2008, 03:36:47 pm »
didnt know that 8)
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

tenai98

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Re: Rare or what??
« Reply #5 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...
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

saralynn143

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Re: Rare or what??
« Reply #6 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
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

calimama

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Re: Rare or what??
« Reply #7 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!
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

Nancy Drew

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Re: Rare or what??
« Reply #8 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
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Raven

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Re: Rare or what??
« Reply #9 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
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

sgerrard

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Re: Rare or what??
« Reply #10 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
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.

wendysig

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Re: Rare or what??
« Reply #11 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
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

mema

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Re: Rare or what??
« Reply #12 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
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

al

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Re: Rare or what??
« Reply #13 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. 

jazzfunkanne

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Re: Rare or what??
« Reply #14 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?
over 4.5cm AN removed dec 06