Author Topic: Today I was tired of my face  (Read 4792 times)

amymeri

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Today I was tired of my face
« on: September 08, 2006, 04:40:34 pm »
I am back to work full time which requires a lot of public contact and talking which makes me all the more self-conscious about my face.  Don't get me wrong...people are great.  But I hate that I can't pronounce M or B so people misunderstand me all the time, sometimes I spit when I talk, my face is twisted...I know it is getting better slowly but I am 5 months out next week and somedays it's just pretty hard to take.

I know there are lots of people out there who have experienced similar things and worse so I have plenty of good company.  I just needed to get this off my chest!

 :-\ :'( >:(
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Survival Nate

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Re: Today I was tired of my face
« Reply #1 on: September 08, 2006, 04:57:43 pm »

HUGS your still beautiful 


Nate ;D
at age 21yo
AN 5.05cm removed Feb 2005
Gamma Knifed July 2005
at age 31yo
AN regrowth @ 1.5cm - 2014
Pituitary Gland tumor 2mm
https://www.travaddic.com/

amymeri

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Re: Today I was tired of my face
« Reply #2 on: September 08, 2006, 05:30:01 pm »
Nate, your graphics are so cool!  How do you do it???

And I am not beautiful...I am goofy looking...but thanks for the flowers! :D
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Patti UT

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Re: Today I was tired of my face
« Reply #3 on: September 08, 2006, 05:40:25 pm »
AMY
  remember, beautiy comes from within. You ARE beautiful!  Sorry you had a bad day with your face. it gets a little tiny bit better each day. try to be patient. If one thing this nasty AN has taught me is to be more patient. But it's just so dang hard sometimes.

Hugs
Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Cheryl R

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Re: Today I was tired of my face
« Reply #4 on: September 08, 2006, 06:09:22 pm »
    I have found it interesting when patients want to ask you what happened and you can just see them trying not to say something.          My most inventive was an old guy who ask if I had had problems for very long.       If they do ask, giving a brief description can be hard,as it usually leads to more questions.    It can be a good educational tool about ANs if the time and situitation is right.
 I have sure educated my co workers as in a small hospital setting it isn't a well known subject.
                                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Kathleen_Mc

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Re: Today I was tired of my face
« Reply #5 on: September 08, 2006, 06:34:33 pm »
It's been 16 years, I've had many repairs done to my face and although it doesn't look like it did before all the repairs it is still "not right". There are days I think I'm really ugly with my "twisted face" and can't believe when I look in the mirror that face is mine...I don't feel like I look. I have an 8x10 of myself in our front hallway, a picture that was taken about 2 1/2 years before diagnoses, to me I look beautiful in it, in a way it makes me happy to remember the way I used to look (the way I'm supposed to look) and in another way it makes me sad.
There will be times when this will be an issue but over time these periods will be less often and last less and then the thoughts will drift into the back of your mind again.
Take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Obita

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Re: Today I was tired of my face
« Reply #6 on: September 08, 2006, 07:26:01 pm »
amymeri:

One of my surgeons told me I would have good days and really bad days after I had surgery.  I thanked him for being so honest with me.  At my one year check up I thanked him again......boy, was he right.

I hope tomorrow is a good day for you.  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Rc Moser

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Re: Today I was tired of my face
« Reply #7 on: September 10, 2006, 12:33:42 am »
Well, I'm three years out now and I still have the same problems. Small but they are still there. I try not too go too fast when having a conversation. IMO when you get tired or get a headache the symptoms are much worse. I also find it really hard to concentrate or focus when a headache turn bad. I rarely try to smile cause I fell like I look like the Joker on one side. It really makes it hard to get through a day or build any confidence or self-esteem. So, don't think you are the only one. I find things could be a lot worse so I try not to let it get me down. This don't even count the hearing disablities and noise factors causing the BIG BUZZ! I find it's diffucult about every day, but that's the cards were are deal and whe have to play them the best we can. It should get better, but nothing like it was before IMO.
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

Jeanlea

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Re: Today I was tired of my face
« Reply #8 on: September 10, 2006, 09:26:20 am »
My face looks mostly normal if I'm not showing any emotion.  Any time I become expressive you can definately tell there is something wrong.  Most of the time people don't say anything.  I teach in an elementary school and some of the younger kids see me smiling and I see that quizzical look on their face.  Once they get to know me, it's not a problem. 

I've only had one adult ask me about my face.  She nicely asked me if I had Bell's Palsey because she had a friend with that.  I told her it was the result of a brain tumor and we went on with our conversation.

When I get to feeling down about my face I try and remember that it could be worse (someone else on here said that) and that I'm lucky I don't have to look at me all day.  :-)

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Joef

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Re: Today I was tired of my face
« Reply #9 on: September 11, 2006, 10:41:16 am »

uh oh ....

 my driver license is about to expire ... which means I'm gonna have to get a new picture taken next month...... I need to practice for this one  :(
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Laura

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Re: Today I was tired of my face
« Reply #10 on: September 11, 2006, 12:14:55 pm »
Joe - My state (VA) allows you to renew your license online and they use your existing photo... check it out as it might be an option for you if you really don't want the new pic?
Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
http://www.patient-network.com/lparr
It's mind over "matter"... even if the "matter" is in my mind