Author Topic: how do you live with facial paralysis?  (Read 16956 times)

Kaybo

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Re: how do you live with facial paralysis?
« Reply #30 on: March 27, 2009, 09:44:12 am »
Hey Kim~
I LOVE your attitude!!  I have lived with facial paralysis now for 13 years and I try to do the same things as you - except  many days I don't get make-up on.  I am just too busy running after 3 girls!

I would LOVE to chat with you some time - send me a PM if you would like to!

K ;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!

Jim Scott

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Re: how do you live with facial paralysis?
« Reply #31 on: March 27, 2009, 03:08:04 pm »
Hi All!! I don't post here very often but I just wanted to add to these posts.

Be who you are and hold your head up because I feel people will not look at you because of any facial issues but as a confident person.

Anyway, I am trying to bring myself up a little because I just came across some old pictures of me and it made me sad that I can't look like that anymore.

Thanks for listening everyone.

Kim

In the interest of space, I decided to truncate your excellent post, but I want to commend you for your determination not to allow your facial paralysis to control your positive self-image or characterize you.  Bravo! Kim....and thank you for posting your inspiring message.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nancyann

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Re: how do you live with facial paralysis?
« Reply #32 on: March 27, 2009, 06:55:42 pm »
Hrissy,   I don't know how I missed this 6 months ago !   I also have right sided facial paralysis since 6/19/2006.
Eye problems are THE WORST ! !     For the past 2 years & 8 months I exclusively used Refresh PM - a thick lubricant that
makes a 'shield' over your cornea.    I also use NITEYE, The Dry Eye Comforter, a moisture chamber, every night while
I sleep.
I had the Temporalis Tendon Transfer, like Kay,  it'll give a 'Mona Lisa' smile when you bite down on your teeth on the AN side,
& it pulled up the droop on my face.
This past February I had a pyrex tube implanted into the inner corner of my eye to drain the tear buildup I had (tears would just
roll down my face).  The oculoplastic surgeon is trying to slowly wean me off the lubricant & onto Refresh Celluvisc so the pyrex tube
won't clog !

I hope things go well for you,   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

MAlegant

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Re: how do you live with facial paralysis?
« Reply #33 on: March 30, 2009, 07:54:43 pm »
Kim,
You really did put into words a lot of what all of us feel.  Some (like you) have paralysis, I have other issues, but the result is that I am not the same person I was before surgery and yes, sometimes that makes me really sad.  I can do almost everything I did before, but not everything, and that is a harsh reality.  Like you, I will not let this define me, but sometimes it does defeat me and I have a brief pity party.  After that, life must go on.  Sounds hokey, but there it is.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

lifeisgood

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Re: how do you live with facial paralysis?
« Reply #34 on: April 09, 2009, 08:19:33 pm »
Well, I am 5 years post surgery and thought this would be a good subject for me to comment on.
When I first had surgery (the first couple of years), this was devastating to me.
I was 40 at the time of my surgery and it really hit me hard since my tumor was 4 cm at its largest point and
the facial nerve was involved.  I know I was concerned about it before the surgery but I think I was so focused on
just getting through the surgery that I wasn't prepared for the journey that followed.

Yes, I did have eye problems with dryness.  Today, I am fine.  I don't lube or use drops unless really needed which isn't too frequently.
I've been told that I should watch this since when menopause hits, dry eye could be an issue.

I can manuever a straw with no problems and have no problems chewing or drooling. 

I would say overall, I've learned to accept my face.  That is actually a miracle if you know me from past posts or do a search of my
comments.  I don't feel the need to explain my face.  I sometimes even forget that I look different.
I still don't like pictures but don't cringe when I see one.

I even got breast implants 3 weeks ago.  So, I guess I am no longer concerned about drawing more attention to myself.
In addition, I did have botox for my forehead and restyline for the heavy line around my mouth which appears on one side after I sleep.

I think for me the eye opening moment of acceptance came when I was sittting in my surgeons office in Feb attending a facial training clinic where several
specialists assess your face to help find ways to improve it.  THey handed me a mirror and asked me flat out "what would you like to change?".
I looked intently into the mirror and after a moment said "can you do anything about my lips that don't move in unison when I make certain formations
 with my mouth when I speak.  THey responed "no".  I then looked again and said "I think I am good".

So for those of you who are struggling or new to this journey, be patient , your perceptions may change of the situation just as they have for me.

On a different note, I hope to get a chance to meet you at the symposium in Aug in my hometown. I've found this to be a wonderful support which has helped me along the way.

I still suffer from headaches but keep plugging along trying different things for relief.
Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

moe

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Re: how do you live with facial paralysis?
« Reply #35 on: April 11, 2009, 03:44:11 pm »
Debbi,
Just reading this post, as I just joined a couple of months ago.
How are you doing, and everyone else with facial paralysis?
I FINALLY posted my "gimpy faced" pictures, and am looking forward to some responses about what kind of surgery people think I should have!

I also get sad at times when I see pics of myself smiling. I have dimple on one side now. I was known for my smiley, dimply face. And I would smile when I was feeling cruddy.

I still trudge on, but the eye is always bothering me with the weight of the weight >:(
The oculoplastic surgeeon says that's good for me, it is protecting my cornea (which can easily be compromised). So whenever I read, basically one eye is closed.
Turns out I was born with poor eye reflexive mechanism. The doc could tell by how my other eye responds and from the surgery.So he has even threatened to partially stitch it shut if my eye starts acting up.
Talk about fear factor. I'm always putting in extra lubrication!
OK so life goes on but at a slower pace, and accepting my limitations. But life is good :)
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

kate

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Re: how do you live with facial paralysis?
« Reply #36 on: April 12, 2009, 03:02:42 am »
Hrissy,

 I am late to the party here, and others have already given you excellent advice, both on the practical management of eye issues, and the "how do you live with it" issues too.

I have had the paralysis for 9 years now. At first it was emotionally devastating. I opted for not having the nerve transplant, or whatever they call it. Even the best case scenarion of possible outcomes seemed like a case of "diminishing returns." I had a couple years of facial exercise training, which did help quite a bit just in terms of facial "posture" and maybe tone.

I did have an emergency tarasopphy (spelling?) a month after surgery, then later, a gold weight, which worked well at first, finally malfunctioned, and actually started eeking its way out. Eeek! did I say Eeek! It was quite frightening, and finally the eye doc pulled it the rest of the  way out.

It turned out to be a blessing, because I had been persistently pestering the insurance company for a few years to approve the palpebral spring implant, which Dr. Robert Levine in Los Angeles does. Finally I got the spring, and it has improved my life tremendously. No more having to cover my eye at night. My eye actually closes now.

I think your biggest question was 'how do you live with it' which I take to mean 'how do you cope emotionally with it?'. Well, I eventually got used to it. I live a normal life, do fun things,  and have a pretty rich life in many ways. At some point I stopped thinking about my face everyday and just started focusing on whatever else was going on...socially, work, etc...

Some of the other challenges of AN were bigger priorites, too, and that eventually took my mind off my looks. For example, I love being outdoors, and a walk outside each day is important to me. It was very important to get my balance back, which was done mostly by walking more each day, and getting back to my Tai chi clases. Being physically healthy and feeling happy by being in movement, is actually more satisfying than worrying about my looks.

Then there was the matter of work. I took the AN as a wake up call about our mortality, and decided it was time to transition back to being a therapist, after a few years of a more financially stable position as a social worker.  That work just was not my calling, and I wanted to get back into the real work which I felt called to do, and leave my comfort zone.

So in my transitoning back to doing therapy, there was the matter of going on job interviews with a crooked face, to find a job to get fresh experience. It was necessary then to tell potential employers my story, so they wouldn't just wonder what was up with my face, and not hire me. Then there was some nervousness at first about new clients coming in, thinking they might somehow not think I was competent because of how I looked. But as it turns out, people are more concerned, of course, with their own problems, than what their helper looks like.

To make a long story shorter, my life in general is pretty normal and happy for the most part. The facial thing is mostly a soft 'background noise' which is heard mainly when I see pictures of myself, which gives me a temporary feeling of sadness. Yes, it would be great to have my big smile back, but I can still have a big hearty laugh even if it looks funny. Most people look funny when they laugh!

Kate
Surgery 5-1-2000,  3.9cm, Huntington Memorial Hospital, Pasadena, California. 
Gold weight first couple of years.
Palbebral eyelid spring 2004 by Dr. Robert Levine "saved my life."
 I  have been enjoying life a lot, even with a crooked face and one sided hearing.

saralynn143

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Re: how do you live with facial paralysis?
« Reply #37 on: April 12, 2009, 05:29:00 am »
Very nice post, Kate. thank you.

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

mimoore

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Re: how do you live with facial paralysis?
« Reply #38 on: April 12, 2009, 09:03:19 am »
I agree with Sara.
Very well said Kate!
Happy Easter!
Hugs Michelle  ;D
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.

kate

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Re: how do you live with facial paralysis?
« Reply #39 on: April 13, 2009, 03:03:56 am »
Sara and Michelle,

Gee, thanks!

Kate
Surgery 5-1-2000,  3.9cm, Huntington Memorial Hospital, Pasadena, California. 
Gold weight first couple of years.
Palbebral eyelid spring 2004 by Dr. Robert Levine "saved my life."
 I  have been enjoying life a lot, even with a crooked face and one sided hearing.

CROOKEDSMILE

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Re: how do you live with facial paralysis?
« Reply #40 on: April 16, 2009, 05:13:26 pm »
I don't have a choice!
Angie