Author Topic: Rare or what??  (Read 9665 times)

Omaschwannoma

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Re: Rare or what??
« Reply #30 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. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Nancy Drew

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Re: Rare or what??
« Reply #31 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
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

LADavid

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Re: Rare or what??
« Reply #32 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.
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

calimama

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Re: Rare or what??
« Reply #33 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).

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 #34 on: September 12, 2008, 01:26:07 pm »
Cute remark, LADavid!!! ;D ;D ;D  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

Jim Scott

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Re: Rare or what??
« Reply #35 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 
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.

saralynn143

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Re: Rare or what??
« Reply #36 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
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