Author Topic: still feel like everyone is looking at my face  (Read 3742 times)

Karen

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still feel like everyone is looking at my face
« on: April 30, 2014, 06:13:45 pm »
Even after 10 years I am still so aware of how my face looks.  not a day goes by that I don"t think about  how my face looks and feels.  Do other people feel that wAY?  i HAD A 12/7 nerve graft done so when I move my tongue my face moves some.  I have facial trained with Jackie Diels for several years and we have done all     we can.  I also don't have feeling on that AN side.  I guess I need a pep talk that Jackie always gives.  Just have to vent.
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

v357139

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Re: still feel like everyone is looking at my face
« Reply #1 on: April 30, 2014, 08:06:33 pm »
Karen,
I am very sorry for your trouble.  I am sure it is no fun.  It also sounds like you did your best to work at recovery, so you should be proud of the effort you made.  I did have a very, very rough time before my surgery, so I can empathize in that way.  If you ever need someone just to talk to, please feel free to PM me.  I am a good listener.
Sincerely,
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Echo

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Re: still feel like everyone is looking at my face
« Reply #2 on: April 30, 2014, 08:24:21 pm »
Hi Karen,

When I was first diagnosed with my AN and went to a local support group to learn about all the risks I faced, I met two women with facial paralysis.  The first had it very mild, similar to someone who may have had a mild stroke.  The other woman had it much worse.  She would have been in her 60's and had been dealing with her paralysis since her 40's. I spent quite a while speaking to her that evening and by the end of our visit I felt blessed to have met her.  She was kind, gracious, generous in sharing her story and offered me some of the best advice I received.  I went home that night not thinking about her appearance, but delighted to have met someone so warm and caring.  Her personality, strength and compassion overshadowed her physical appearance. 

Venting is good, go ahead and vent big time!  Then let your inner light shine through!
Cathie.

« Last Edit: May 01, 2014, 04:05:00 am by Echo »
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

saralynn143

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Re: still feel like everyone is looking at my face
« Reply #3 on: May 01, 2014, 08:17:28 am »
I'm almost six years post-surgery. I estimate I have 60-65% of function back, look fine at rest and with an acceptable small smile, but a lopsided grin. My biggest worry is that my lips look strange when I talk.

Truthfully, I do think about my face every day, but only when I am looking at myself in the mirror. Nobody seems to react in day-to-day life so I don't think about it either.

I firmly believe that we are our own worst critics. Our appearance is a big part of our self-image and that has been disturbed. However, if I were to meet someone with the same level of paresis, I would be sympathetic, not critical. We need to be as kind to ourselves as we are to others.
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

lifeisgood

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Re: still feel like everyone is looking at my face
« Reply #4 on: June 04, 2014, 06:59:29 pm »
I am so grateful that you posted this so thank you!
I am 50 and single again and my confidence is pretty low when it comes to my looks.
I am attractive but the facial issues really make me feel insecure.
I walked into a doc appt with a really bad cold and the new doc walked into the room and she had this really empathetic look on her face and she just said "what happened to you?" She asked about the face droop.  I actually had to laugh because here I was thinking that she felt badly because I looked like death from my cold.  :) I also had botox done. The doc shot me up around my mouth.  I called him and said that I was having problems not biting my lower lip and that my smile looked worse than before I had the botox. He met with me and told me that the smile is not what I should be focusing on.  My mouth was making involuntary twitches and that was people were seeing.
Yikes, Here I was thinking it was just the smile!

I have been asked if I have Bells palsy or had a stroke and then there are some who don't think anything was wrong.
It is truly perception and being overly critical.

I have a few good pics that I post on facebook but am usually the first to dodge the camera.
Mary
« Last Edit: June 04, 2014, 07:14:39 pm by lifeisgood »
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

dslifer

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Re: still feel like everyone is looking at my face
« Reply #5 on: June 05, 2014, 08:50:54 am »
I am so sorry for everything you are going through. I agree with Echo. I am a teacher and was very self-conscious about my facial palsy when I came back to my classroom of 6th graders. However, after awhile people tend to see what is on the inside of a person. I even had one of my students ask why I was leaving school early. When I mentioned it was for an eye appointment for my palsy, she said "oh yeah..I forgot you even had that!" I think we are more self-conscious about our own appearance than others. I'm sure when people look at you and get to know you, they see your personality shining through and nothing else matters.  :)
3cm AC tumor diagnosed 1/14
Translab to remove tumor Dr. Chamoun/ Dr. Lin (KU med) 2/28/14
Right side facial paralysis/ SSD with tinnitus