Author Topic: What a difference 1 year makes~  (Read 10067 times)

epodjn

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Re: What a difference 1 year makes~
« Reply #15 on: June 24, 2009, 03:19:28 pm »
Michelle,
I had the same feeling about my pictures at my son's wedding, and another son is getting married next month, more pictures, AAGGHHH. But someone here said something that has stuck with me and gotten me through a lot. Here it is "There are lies, there are damn lies, and there are photographs". Pictures are LIES! What you see in a photo is not how you really look in motion. For those of us with paralysis a "still" isn't very flattering but we look a lot better in real life. So put those pictures in a drawer somewhere and remember you look a lot better than that. I know this is true because the videos of me at the wedding are so much better. But don't stop taking the pictures. They do help you see time progression. Some friends took pictures of me in the hospital and I look so much better now. Not great, but better. Hang in there.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

mimoore

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Re: What a difference 1 year makes~
« Reply #16 on: June 24, 2009, 03:30:30 pm »
Thanks gang, that was my wee pity party that is over now. A closed mouth smile is best but I am such a smiley happy person and smiling is something I would do every minute of every  day. I was known for my huge molar smile and at times I feel sad I really liked my smile. When I smile now each side looks fine on it's own but not together, there is only symetry at rest not while I am smiling. One eye is open more and my mouth I'd lopsided. You are right time will help! Trying to be my optimstic self, some days are just harder than others.
Thanks for letting me vent. No one sees this side of me, many think I should just get over it . Wishing they could walk a mile in my shoes then comment!
Michelle
« Last Edit: June 24, 2009, 03:47:41 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

nancyann

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Re: What a difference 1 year makes~
« Reply #17 on: June 24, 2009, 05:04:35 pm »
Michelle:  I'm sorry you felt bad about your picture.  I always had a great smile too - my aviator picture is pre-surgery, my AN side.
You just need more time - you have been getting improvement & will continue to.   
Pictures are pictures (some are good, some aren't),  your aviator picture looks great,  not yet where you want your smile,  but you can see it coming ! !

Continued healing my friend,   Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

moe

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Re: What a difference 1 year makes~
« Reply #18 on: June 24, 2009, 06:33:39 pm »
Michelle,
Sorry for the high jack, Angie!
Totally empathize. It's ok to have pity parties. I will join in ANY time.
My smile was my trademark and I'm still p#%^@! 3 years later, and not ready to give up. >:(
You have good muscle tone in your pics from what I can tell, and half a smile is better than no smile, I guess.
Keep hanging in there and vent when necessary. Let's make a pity party post!
Who wants to start it?
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

arkansasfarmgirl

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Re: What a difference 1 year makes~
« Reply #19 on: June 26, 2009, 11:47:21 am »
I just had graduation with my kindergartens and of course the parents wanted photos and I agreed (not really wanting my picture). I got a copy sent to me from one of the parents and man I wanted to cry, i thought I was so much further along and then WHAM I see a photo and I look terrible - I am going to cry (not in front of my students). Yes life is good and I am thankful that I have recovered this far but seeing a photo makes me very sad - will I ever be back to the way I was?? Maybe I need to face it that I am not ever going to be the same again! :'( :'( :'( :'(
Harsh reality!
Michelle  :'(

Hugs to you Michelle.  I went through the same reaction after letting my pic be taken at Easter.  I have been assured that the real thing looks way better than what shows up in a picture, but all the same, it makes me sad that I won't be able to look back on pics of myself at this age (I just turned 35) when I get old and be able to say "damn, I looked good".  LOL 

Vonda

saralynn143

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Re: What a difference 1 year makes~
« Reply #20 on: June 27, 2009, 07:46:12 am »
I have been assured that the real thing looks way better than what shows up in a picture, but all the same, it makes me sad that I won't be able to look back on pics of myself at this age (I just turned 35) when I get old and be able to say "damn, I looked good".  LOL 

Vonda


Vonda, I wouldn't be surprised if this turns out to be a misconception. I look back now at pictures when I thought I was chubby, and now realize that I looked very nice. As we mature we become a little easier not only on others, but on ourselves as well. I truly believe there will come a time when we accept how we looked as part of the process of becoming the person we are. I know I am a lot less distressed looking at pictures from last summer that horrified me at the time.

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

wcrimi

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Re: What a difference 1 year makes~
« Reply #21 on: June 27, 2009, 08:30:50 am »
I love when I hear that people are still making progress after an extended period of time. That gives hope to rest of us.  ;D
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

saralynn143

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Re: What a difference 1 year makes~
« Reply #22 on: June 27, 2009, 07:54:42 pm »
I also have a what-a-difference story. Today I picked up my daughter and two of her teammates from basketball camp at the University of Missouri. Last year she attended camp there as well. I was only a couple of weeks out of surgery. My face was all droopy, my eye was painfully dry and I could not tell what anyone was saying in the big auditorium due to diminished hearing on one side. I wasn't even able to drive myself.

Today I have symmetry at rest and a half decent small smile. (I noticed today that I can see a lot of teeth on the top, but the bottom lip does not pull down so my grin is still crooked.) I am quite accustomed to a permanent thin layer of Refresh PM on my left eye -- I don't even have problems driving with the ointment. And I had no problem understanding what the coaches were saying over the PA system. The only adjustments I have to make due to hearing is putting the phone to my right ear and occasionally asking someone to stay on my right side during a conversation. Other than that I'm good to go.

Until I attended the awards assembly today, I did not truly comprehend just how far I have come. Last year I was impaired on many levels. This year I am darn near normal. I can't wait to see what next June brings.

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

epodjn

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Re: What a difference 1 year makes~
« Reply #23 on: August 12, 2009, 04:43:53 pm »
I just noticed there was a new post on this thread and had to read it. I ended up reading all the post and had to update on my SMILE. In my first son's wedding pictures in May I had the same old AN pirate smile. But when my second sone got married on Aug. 7th I had a real SMILE! Ok, it's pretty small, but it's no longer the pirate smile. My therapist says watching nerve regeneration makes watching paint dry seem like an action adventure and she's right. But when the progress does happen it's soooo good.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

kimbo

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Re: What a difference 1 year makes~
« Reply #24 on: August 14, 2009, 07:22:38 pm »
Angie

What an inspiration for others not yet posties.  My goal post surgery is to water ski no matter how long it takes, as it is the one thing our whole family enjoys and I want to remain part of that.

Thanks again Angie and wishes in more AN improvements.

Kimbo :)
Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

Debbi

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Re: What a difference 1 year makes~
« Reply #25 on: August 15, 2009, 04:38:21 pm »
Way to go, Angie!  It is so important to celebrate the progress - and it sounds like you have much to celebrate!  Keep smiling!
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

wcrimi

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Re: What a difference 1 year makes~
« Reply #26 on: August 16, 2009, 01:31:54 pm »
My goal post surgery is to water ski no matter how long it takes, as it is the one thing our whole family enjoys and I want to remain part of that.

Kimbo :)


Right after my surgery my girlfriend asked the surgeon if I would be able to water ski.  She must have had a smile on her face because he immediately asked if I could water ski before the surgery (I never even tried). He was too smart to fall for that old joke.  :D


1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move