Author Topic: Sick of frozen face  (Read 6688 times)

TLC719

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    • Teresa L Childers
Sick of frozen face
« on: April 15, 2008, 04:28:17 pm »
It's been two years since AN surgery & my face is still numb &can't smile.I want to smile again so bad.This makes me angry sometimes& I just have a hard accepting all this.I still want try acupucture as my last resort.I do lots of facial exercises but nothing helps.Advices would be welcome.    TLC 
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

nancyann

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Re: Sick of frozen face
« Reply #1 on: April 15, 2008, 04:47:17 pm »
Hi Teresa:  I know how you feel - after 1 1/2 years of total facial paralysis I finally had the T3 surgery (Kaybo had the T3 also, about 2 weeks ago).
Your face would still be paralyzed but at least for me the droop is gone & I feel more like myself, I'm happy again.
There's also a nerve graft, don't know how you feel about it - the nerve graft would give movement back, it just takes longer to see results...

Definitely go for the acupuncture 1st, especially since you have 'some' movement (?).

Hang in there,  cry when you have to - I know I did & it did help;  get angry, scream.   Then remember to do nice things for yourself, pamper yourself
your body & mind need it - you've been through so much.

Keep a peaceful heart my friend,   Nancy
« Last Edit: April 15, 2008, 04:49:19 pm by nancyann »
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

yardtick

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Re: Sick of frozen face
« Reply #2 on: April 15, 2008, 05:37:24 pm »
My face is frozen the other way.  I guess tumour on my facial nerve is up to no good.  I cannot smile on my left side now.   I'm off the steroids, my face is quite swollen, my tongue is very thick and I have only half a smile.  I have some sharp shooting pain and I feel like cheek is being ripped off my face.  My head aches.

I called in sick yesterday and today, not going in tomorrow.  Called the Dr and I have an appointment May 1 @ 2:45pm.   I'm panicking...........

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

TLC719

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    • Teresa L Childers
Re: Sick of frozen face
« Reply #3 on: April 15, 2008, 06:00:12 pm »
It' so bad when you can't smile when others smile at you .they must think I'm one sour broad.So I learned to just give a hello.I have dreams I'm looking in a mirror & I  can smile normal and I soo happy.Then I wake up.Do you guys ever have dreams like that and your face is back to normal again?Nancy&Marie-Yardstick you had beautiful smiles & people that really know us they still see it.Hugs  TLC
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

yardtick

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Re: Sick of frozen face
« Reply #4 on: April 15, 2008, 06:35:38 pm »
Don't make me cry Teresa!!!

You are beautiful too!!   This is jsut a a little detour a long the road. 

I'm afraid to show my face at work can you believe it? 



Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Kaybo

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Re: Sick of frozen face
« Reply #5 on: April 15, 2008, 07:03:13 pm »
Girls~

Come on...we can do this!!  As many have told me recently, it didn't matter if my surgery was a success or not because they could hear the smile in my voice!  I know it is the same with all of you!  You are beautiful -- show the world some 1/2 smiles.  I didn't do this surgery b/c I was ashamed of my face, I did it because I could and it might make family pictures look better!

K -- 12 YEARS w/ a paralyzed face!!   ;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!

TP

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Re: Sick of frozen face
« Reply #6 on: April 15, 2008, 07:47:23 pm »
I totally miss my full smile. A goup of my high school girl friends got together a few weeks ago for lunch. We had someone take a picture of us on my cell phone. They all had big smiles and I had a stupid half smile. I try very hard to keep positive but let's face it, it stinks! I am very fortunate that my face does not droop and looks very much normal until I smile. I have pain daily and that is probably due to my job talking on the phone all the time. I have not seen much improvement for over a year now and I am approaching my 2 year anniversary of my AN surgery.

TLC, my advice, look into accupuncture. It just doesn't make sense that we can move our face a little but can't reach that full smile. I think the nerve endings are working and need some type of juice to get things stronger. I was planning on waiting until my next appointment with my neurosurgeon this fall. I would think at that time I may need some help to get things moving along.

 
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

TLC719

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    • Teresa L Childers
Re: Sick of frozen face
« Reply #7 on: April 15, 2008, 08:38:59 pm »
TP    I also had double vision after surgery.Everything was doubled & upside down.That was wild ,when I closed my eyes &opened thats when it would happen.I just imaged it was a sci-fi flick.But there was one problem I was the star.After a few days my vision got alot better.How long did your's last?     TLC
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

TP

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Re: Sick of frozen face
« Reply #8 on: April 16, 2008, 02:24:21 pm »
My double vision never got better. I had surgery last summer to correct the double vision (had double vision for 15 months). That surgery was very unusual. Two day process, one day in the hospital as an outpatient, went home and my eye was in the opposite direction but there was a lose stich in my eye. My eye had been facing my nose, after surgery it was facing outside. Totally wierded me out. The next day I went back in the dr's office for over an hour while she basically screwed my eye back into place and once it finally got in place she tightened the stiche and my eye was looking straight. Love my DR, she did a great job! A few months later I had the gold weight removed. My eye closes "almost" perfectly but at least I can see straight and it looks somewhat normal.
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Karen

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Re: Sick of frozen face
« Reply #9 on: April 16, 2008, 04:06:39 pm »
TP, did you have the 12/7 done.  My facial nerve was severed so I had to have that.  I had my eye weight removed last month.  I can close my eye if I concentrate.  How is your blick?  Did it take you awile to get used to not having the weight?  How about keeping it moist?  Karen
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

nancyann

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Re: Sick of frozen face
« Reply #10 on: April 16, 2008, 05:25:50 pm »
Anne Marie:  I'm so sorry this is happening to you.  Don't like hearing you're in pain & symptoms are worsening.   It was hard going to work at 1st, but the bills had to get paid so I just bit the bullet & did it.

Teresa:  Immediately after surgery I would dream my face was normal,  then I started having dreams of it paralyzed.  Now I have both !

TP:  I have always been amazed at your 'get up & go', especially doing self defense post surgery !  A couple of times when I had pictures taken I would turn my face & smile big so only the smiley side showed.

Please,  take a deep breath & exhale, you too Anne Marie,  go slowly, know that there are options down the road.  The option I took has given me back alot of happiness.

Always good thoughts,  Nancy

ps:  this kinda cracked me up:  as I'm reading this thread Teresa, you called Anne Marie 'yardstick', instead of 'yardtick'  -  thanks for the chuckle !
« Last Edit: April 16, 2008, 05:30:07 pm by nancyann »
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

TLC719

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    • Teresa L Childers
Re: Sick of frozen face
« Reply #11 on: April 16, 2008, 08:21:26 pm »
Woops I'm not so good with names.Nancyann glad you got a laugh!Yardtick sory about that!   Teresa 
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

yardtick

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Re: Sick of frozen face
« Reply #12 on: April 17, 2008, 03:49:08 pm »
I need to laugh Teresa even though it hurts.  I believe laughter is the best medicine.  Does anyone else have pain with the freezing?  Even the left side of my neck hurts, my head hurts and I cannot seem to focus.  Two more weeks until I see the Dr.  I'm really thinking about going off work.  I'm not coping.  I need my mind clear so I can prepare for what comes next.   

I'm lucky to have both STD and LTD.  My family finally realizes I cannot work, be a wife and mother and struggle day to day with the headaches, and constant facial pain. 

I guess I'm not super woman anymore :'(
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

TP

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Re: Sick of frozen face
« Reply #13 on: April 17, 2008, 09:28:35 pm »
Karen, my eye blinks ok. My family tells me it looks like the other eye but I think it does not close 100%. Once he removed the weight it felt great. I find when I work long hours or I don't get enough sleep my eye and face have more problems. The eye gets very dry, I have no tears in that eye (which I really miss, I haven't had a good cry since before my AN was removed). Lately my face has been hurting more. My upper lip feels swollen but it isn't. So I am praying this means some nerve improvement. I don't take any pills but I really am going to look into something that will relax my face. I don't think we should have to live like this forever....

Nancy Ann - you are correct, when I am in my taekwondo class, I forget I have any facial aches or eye problems. I don't feel the pain in my face because the rest of my body is tired and sore : )
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

daylilly

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Re: Sick of frozen face
« Reply #14 on: April 19, 2008, 08:51:06 am »
Hi everyone,
 I've had facial paralysis a little over two and a half years now. I haven't posted in awhile. We sent our oldest off to college with an undiagnosed learning disorder which is
our main focus now so my face is "on hold."  I hope to get the T3 done eventually.  Anne Marie, I felt like my cheek was being ripped off my face when I got home from
the hospital. I also felt like someone had tied rubber bands around my teeth on the AN side and was trying to pull them out. I got back a little movement along my nose
but the EMG showed no regeneration and the ENT said the movement was likely from nerves crossing over from the good side.  Teresa, I too have smile dreams. I had
a really good friend die of breast cancer last year. The cancer claimed every bit of her except her beautiful smile and I wished I could smile back. When I'm at my
kids band performances, I hold the droopy side up with my hand so that I look like I have a smile. Nancy, I'm so glad you're happy with your T3 results.    Sue








« Last Edit: April 19, 2008, 09:56:04 am by daylilly »
3 cm AN
translab July 2005, Emory, Dr. Mattox, Dr. Olson
gold weight, Dr. Wojno
left-sided deaf
left-sided facial paralysis