Author Topic: picture of me after a year  (Read 7028 times)

justjohn85

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picture of me after a year
« on: August 31, 2012, 03:47:48 pm »
Hello everyone
I thought it would be a good idea to show you a picture of me after a year. i was born with facial palsy on my right side and approximately last year i underwent the second stage of cross facial nerve graft where muscle was removed from my chest and implanted to my face.

ive got to say, one year on, i'm not very happy with the result. as you can see from the pic, my operated side is still swollen despite one whole year(although its gone down considerably) and not much has changed in regards to movement. can anyone tell me how long these things usually take? i was really hoping this would change my life so i can start living like everyone else.

i'm 26 yrs old and because of this my confidence has always been shattered and this was my last hope but doesnt seem to be working

i'm the second one from the left with the swollen face. looking at this picture, they all look normal and happy but i look at mine and see some mishapen freak who shouldnt even be allowed outside.
« Last Edit: September 09, 2012, 05:23:46 am by justjohn85 »

LakeErie

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Re: picture of me after a year
« Reply #1 on: August 31, 2012, 06:41:02 pm »
justjohn, I am sorry to hear of your continuing problem. I have no insight to offer into your type of surgery, but feel I should say that after identifying you in the picture you do not not appear "freakish." The swelling on one side is apparent, but the rest of your features are normal. What information has your surgeon provided to you? It sounds as though you need someone professional to help guide you through your feelings and loss of confidence as well as how to pursue
what remedies may be available to you. I am not you, so I cannot say I know how you feel, but you are too young to feel hopeless. Good luck
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

justjohn85

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Re: picture of me after a year
« Reply #2 on: September 01, 2012, 03:17:55 am »
thanks a lot. appreciate it

Kaybo

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Re: picture of me after a year
« Reply #3 on: September 02, 2012, 05:41:37 am »
John-
I have had a paralyzed face since I was 25 (almost 17 years now) and I can spot a facial imperfection from a mile away. I even had a friend who had AN surgery & I spotted a slight weakness in her face before her Drs did (or at least before they said anything). I will be honest & say that I'm viewing this on my iPhone but I couldn't even find you in the picture until you stated where you were. Yes, it may be swollen but at least you don't have the funky eye & your smile looks good!! Believe me, I KNOW it is hard to look different - esp when you are young - but youve got to keep living life. DO NOT LET THIS BEAT YOU!!  I had the T3 where they took tendon from my leg. Honestly, it didn't swell that much or for that long, but it did stay swollen for longer than I thought it would. What does your Dr say? You will be in my prayers!

;D
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: picture of me after a year
« Reply #4 on: September 04, 2012, 08:30:06 pm »
Call me slow, but it took me a while to find you in the picture.  I didn't see your note at the bottom until after I figured out who you were.

You don't look freakish to me.

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

saralynn143

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Re: picture of me after a year
« Reply #5 on: September 05, 2012, 12:09:13 pm »
Hey justjohn85,

I am just over 4 years post-op. Let me tell you something that I have learned over those four years - we see ourselves much differently - and more harshly - than others do.

In an interactive situation, people don't look at us the same way they look at a photograph. They are focusing on our eyes and our mannerisms, not on our mouth (unless they are deaf and have to lip-read) or cheeks and not at the whole face. I know for a fact that my mouth is not symmetrical when I talk. However a couple of weeks ago during a conversation with a woman (who also happens to be a nurse) at church, she said, "Sara, isn't it just wonderful that you have had a full recovery?" A hundred responses raced through my mind, none of which was to agree with her. However my fine polite-at-all-cost training kicked in and I said something like "I am certainly thankful for the recovery I have been blessed with." But you know what? She truly sees me as fully recovered.

I'm sure you have also heard the expression, "We are our own worst critic." My older daughter took a picture of my younger daughter and me when we came to visit her in Vietnam last Christmas. I hate it. I think I look like a dweeb. I see a crooked smile and a flat nostril and uneven eyebrows and all sorts of other imperfections. When I asked my daughter not to post it on Facebook, she said, "Really? It's one of my favorite pictures of you. Look how pretty and happy you are." I let her post it.

Have you ever heard of Shelby Dressel? She was born with an underdeveloped facial nerve on the right side. She sings with her own band and competed on American Idol, making it to the top 50. Simon Cowell thought it was a mistake that she was sent home and Ellen DeGeneres invited her to perform on her show. Like Kaybo, I am attuned to facial weakness, but when I see Shelby perform, I am blown away by her talent, not her appearance. Here is a link to her YouTube page: http://www.youtube.com/user/shelbydressel

Anyway, I bet that each guy in that picture could look at it and pick out something wrong with his appearance. I also bet they look at you and see the whole justjohn, their friend, not just your face.

How long has it been since you last saw your surgeon? He or she should be able to answer your question about how long it should be taking. There are tests to determine how your nerve impulses are firing. There are also physical therapists and facial retrainers that can help to improve appearance.

Finally, I want to say something about your final sentence where you say that you look like a misshapen freak who shouldn't even be allowed outside. I'm sorry if this sounds harsh, because I don't mean to, but you need to get over that. Life is so much more enjoyable when your focus is outward instead of inward. It sounds like you may be depressed, which is understandable and treatable.

I wish you all the best and will keep checking back about your progress.
« Last Edit: September 05, 2012, 05:42:02 pm by saralynn143 »
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

Brewers7

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Re: picture of me after a year
« Reply #6 on: September 05, 2012, 02:02:49 pm »
Lots of wisdom from the previous posts.  When I first glanced at the photo, I scanned it to see if I could pick out the AN/facial paralysis patient.  You were not my first pick.
« Last Edit: September 07, 2012, 02:35:27 pm by Brewers7 »
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

alabamajane

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Re: picture of me after a year
« Reply #7 on: September 06, 2012, 12:54:13 pm »
I wholeheartedly agree with last two posts...I had not picked you out either till I read under the photo...

I also have been dealing with facial paralysis for 11 mo now (not swelling though) and " it ain't easy",, but it does get better with time and acceptance,, I have had to accept that this is me now and it will get better with some time and it is... I did not have the procedure done that you did, I had a 12/7 graft of tongue nerve to facial nerve to help relieve the paralysis.. so I can't exactly answer your question about swelling..

I agree that you should talk to your Dr if you have not to see if the swelling should have gone down more and what his/her expectations are for recovery.. it may help your feelings and Dr may have some suggestions to further recover...

I am "considerably" older than you but am still very self-conscious in public, however, I can imagine how you feel being young.. try not to be so down on yourself,, heck if "it " was all that bad, your friends probably wouldn't "hang" with you,, huh????? I am sure they don't "see" it as you do,, they enjoy your company evidently and you should enjoy your life.... there is much more to life than outward appearance,, I know that is hard to hear being young, but it is so true..
Take care, thanks for sharing and letting us maybe help you with some advice.. you can always come on here to rant and vent,, we are here to listen and help if we can.. Good luck to you! Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

justjohn85

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Re: picture of me after a year
« Reply #8 on: September 06, 2012, 02:40:21 pm »
Thanks for your advice everyone. Very much appreciated. Yeah I will book an appointment with the doctor to see where to go from here.

jazzfunkanne

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Re: picture of me after a year
« Reply #9 on: September 07, 2012, 01:57:42 am »
There is a lady in the uk , and this happened to her face, she is thinking of having it done again x
over 4.5cm AN removed dec 06

leapyrtwins

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Re: picture of me after a year
« Reply #10 on: September 08, 2012, 06:33:05 pm »
We are our own worst critics.

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

justjohn85

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Re: picture of me after a year
« Reply #11 on: September 09, 2012, 05:24:22 am »
thanks. ive removed the picture due to a request, but i appreciate all your advice