Author Topic: Newly Diagnosed  (Read 6231 times)

JerseyGirl2

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Re: Newly Diagnosed
« Reply #15 on: March 04, 2009, 11:44:44 am »
I think Lori's response to the facial paralyis issue is just outstanding, and I hope that everyone will read it.

Thanks for all the wisdom and insight that post imparts.

Catherine (Jersey Girl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Kaybo

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Re: Newly Diagnosed
« Reply #16 on: March 04, 2009, 12:05:30 pm »
I was going to reply earlier and got called away and so am just now getting back to this.  Lori did a wonderful job describing it!  I have lived with this for 13 years now and usually don't even think about it.  I have noticed the staring more when I am out of my comfort zone.  It is not that people aren't staring all the time, but I don't have time to think about it at home (in MY town) when I am trying to do 100 things at once!!  I notice it more when I am somewhere different & probably don't feel as comfortable.  Last year when we went skiing, I noticed it a LOT!  However, subconsciously, I am probably a little more nervous but don't realize it...does that make any sense??  Staring is really just most peoples' way of wondering in their own head what has happened and don't realize that they are looking at you too long!  I told my students to always ask if they were curious - most people would rather explain.  Just like Lori said, the people that matter don't care at ALL and I think there are MANY other people in WalMart that look more strange than I do - at least I don't have a mullet and flannel PJ pants on with my fat, BARE stomach hanging out!!  Let's hope that you don't even have paralysis and if you do, it is very temporary!  ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Newly Diagnosed
« Reply #17 on: March 05, 2009, 11:26:53 pm »
Lori, Kay, and Cheryl thanks for the wonderful perspectives on facial nerve damage.

As one who hasn't had to deal with it, it's hard to personally relate, but you all did a great job of describing what it's like. 

Jan

Special note to Kay - I'm SO glad you don't have a mullet  ;)
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

Jim Scott

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Re: Newly Diagnosed
« Reply #18 on: March 06, 2009, 03:37:26 pm »
I just wanted to jump in and add my appreciation for Kay and Lori's astute observations on dealing with facial paralysis.  Both were succinct and, coming from their personal experience, as moving as they were honest.  I believe behavior under adverse conditions reflects character and these two ladies have certainly showed theirs.  Thank you Lori - and thank you, Kay. 

Like Jan (leapyrtwins), I didn't experience facial paralysis before or after surgery (and radiation) - but many AN patients do.  The posts I've referred to offer excellent insights based on these young ladies' hard-won experience, as well as offering real hope that a full life is quite achievable while one is dealing with facial paralysis. 

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.

suboo73

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Re: Newly Diagnosed
« Reply #19 on: March 11, 2009, 04:30:13 am »
I think Lori's response to the facial paralyis issue is just outstanding, and I hope that everyone will read it.

Thanks for all the wisdom and insight that post imparts.

Catherine (Jersey Girl 2)

Hi Elizabeth!  So glad you have found this wonderful group, with all of their collective experience, knowledge and wisdom.
I like what Catherine said - the information from this forum gives us perspectives we would probably not imagine.
You have come to the right place - there is just no other way to say it!

All my best to you as you approach your surgery date!
I believe you are young and strong and will come through this with flying colors!
Be sure to keep us posted on your progress. 

My thoughts and prayers,
Sue
 
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W