Author Topic: new worry....  (Read 2175 times)

kdmayb07

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new worry....
« on: November 15, 2008, 01:00:14 pm »
woohoo go bucks!! haha

thank you so much for all of your wonderful input on my previous posting, it makes me feel better about the consultation w/ dr chiocca, knowing that there are folks on this forum with some of his success stories =)

so before going to bed last night, i was up thinking (which is a very bad thing to do late at night because being tired always makes me more emotional hehe) and i was hit with a new fear...what if it becomes malignant? is that a possibility with this type of tumor? what is the likelihood?

as i said before, she is worried about the aftermath (facial issues and hearing and whatnot). i, however, just want this to be behind us and never rear its ugly head again. i just want her to be happy and healthy, i will take her however i can get her, as long as i have my mom =)

Omaschwannoma

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Re: new worry....
« Reply #1 on: November 15, 2008, 01:44:05 pm »
Hi,

It's okay to worry about the "what ifs", but let me reasure you these tumors are almost always benign!  I'm sorry I do not have stats for you, but for your mom to have a malignant schwannoma is very, very, very slim. 
 
I've been a member for years and I have yet to be introduced to someone who's vestibular schwannoma was malignant. 

Try my motto on for size...."Don't worry until someone tells you to."  In the mean time keep asking your questions as they are valid and we'll do what we can to help. 

Now get some rest.
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

sgerrard

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Re: new worry....
« Reply #2 on: November 15, 2008, 03:37:29 pm »
Here is a quote from a recent article (Oct 2008) (see http://anausa.org/forum/index.php?topic=7837.0):

"Eight case reports of malignant transformation of acoustic neuroma can be found: 2 followed external beam radiotherapy, 2 followed stereotactic radiotherapy, and only 4 were spontaneous."

There must have been several hundred thousand ANs diagnosed around the world over the last 30 years. Whatever the actual likelihood is, it is certainly really, really small.

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.

Jim Scott

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Re: new worry....
« Reply #3 on: November 15, 2008, 05:33:13 pm »
Kidmayb07:

Your concerns about the tumor being or becoming malignant are fairly normal but basically unfounded.  As Steve pointed out, the stats prove that the chances of an  Acoustic Neuroma tumor metastasizing are infinitesimal.  Yes, that could happen, just as you may be hit by a runaway tractor-trailer truck the next time you drive on the interstate, but the chances of either event actually happening are extremely small.  Its your choice, but I wouldn't waste my time worrying about this.  Your mom's concerns about hearing loss and facial complications following surgery are, frankly, more valid, although, again, these complications are not a given with surgery and quite often, some degree of hearing and facial mobility return in time.  There are simply no guarantees with this condition but to lie awake worrying about your mom's AN becoming malignant is not really helpful to you or your mom, considering the very, very small chance of that ever occurring.  Please try to relax a bit. 

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.

kdmayb07

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Re: new worry....
« Reply #4 on: November 15, 2008, 07:59:07 pm »
thanks, i feel so much better about that part now, it was just a late night worry i guess...

now the tough part is just waiting until dec. 17 to get her to the consultation with the neurosurgeon at ohio state univ. it feels like forever away!

CWood said that we can send a copy of the MRI dvd to the house ear institute in LA, CA and get a free second opinion over the phone! that is amazing!

High Hopes,
Kristin

leapyrtwins

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Re: new worry....
« Reply #5 on: November 15, 2008, 08:55:21 pm »
Kristin -

my docs (neurotologist and neurosurgeon) told me that 99.9% of Acoustic Neuromas are benign.

You can't ask for better odds than that.

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

Debbi

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Re: new worry....
« Reply #6 on: November 16, 2008, 11:31:36 am »
Yes, Kristin, don't worry about malignancy.  It is so extremely rare as to be statistically insignificant.  That being said, I'll confess that I do my very best worrying late at night!  ;D  I know it's pointless, but can't help myself...

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