Author Topic: Almost 2yrs and  (Read 2454 times)

linny

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Almost 2yrs and
« on: March 05, 2008, 01:27:35 pm »
 I still have facial paralyzes, I dont droop I have like a snarl  and my eye still half closed and waters when I eat. I am so upset with this I get depressed and I wander will it ever go away?/Aug. 2006 had 2 surgeries and was told about 6 months my face would be back to normal.     People  think Im mad at them I think because one side of my lip snarls up even when I smile It doesnt move.(except my eye closes) Its just weird and I hate it.  Anyone else keep paralyzes  this long?? :'(http://[color=brown][/color]
Linda-2yr post AN 3-cm left side.  OHSU hospital , slow recovery for me. But then I had to have 2 surgeries with complications swelling of brain,

Kaybo

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Re: Almost 2yrs and
« Reply #1 on: March 05, 2008, 01:40:21 pm »
Linny~
HI!
I almost didn't write this because I certainly don't want to be discouraging... the right side of my face has been paralyzed now for 12 years (I was 25 when I had surgery).  I don't like the way my face is, but I just try to concentrate on all of the wonderful things I have since I am still alive and around to enjoy life.  I am certainly not wanting to minimalize your feelings, nor am I just one of those sunny, rose-colored glasses type girls - that just how I choose to cope.  It makes me mad when Dr.s tell you that it WILL come back because each body is different and reacts differently to the stresses caused by AN.  I would definitely prefer "usually;" however, I will say that the Dr.'s were pretty up front with us about what "could" happen but my hubby & I weren't really prepared b/c we didn't think all those "worst case senarios" could happen to us.
I have just found out about the T3 surgery that Nancyann had done and I am pursuing that to see if I can get my smile back -- PM me if you would like to know more about that or just like to "talk."
K
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!

ppearl214

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Re: Almost 2yrs and
« Reply #2 on: March 05, 2008, 01:49:06 pm »
Hi Linny,

I am so sorry that you still endure.... as I know many here do. I wish I had an answer.... but I don't.  I can share with you one thing that works for me... not for all, but does for me.... I try to put a positive twist on things when someone looks at me funny.  For a "snarl" lip, maybe tell them you are working on your best Elvis impression... or when folks see me with my brown or gray metal  cane, I tell them I opted out of the purple paisley print cane as it tends to clash with my wardrobe... or if folks see my poor body doubled over (as I tend to walk that way), I tell them I am doing my best Aunt Bessie impersonation as impersonations are the best form of flattery (she was in her 80's when she passed).  I know this definately doesn't work for all... but, for me, I find if I take something that brings negative or depressing thoughts to me, I force myself to see the "glass 1/2 full" aspect.  For me, I find trying to take a postive and/or humourous approach to what tries to bring me down does help.

All I can do is send you infamous huggles... and hoping others (such as Kaybo has done... and K, I've been following your blog, hun! :) ) can bring you some sort of solace as to how they handle it.....

Please hang in there.... I can relate to being looked at funny... but I tend to look back at everyone else funny too (kind of my own retaliation).

I know none of this came out right, but I hope you understand what I'm trying to say... I think I flunked and if I did, I'm sorry....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nancyann

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Re: Almost 2yrs and
« Reply #3 on: March 05, 2008, 02:35:33 pm »
Hi Linny:  sorry to hear of your troubles;  sounds like you had a nerve graft?   Most people on the forum who have synkenesis, the snarl as you put it,  go to a facial nerve therapist for treatment & it really helps them.  I think if you look into the bell's palsy website you'll find it under therapists - they have listed therapy centers in the different areas of the US.   Many people have gone to Jackie Diehls (?sp) - who is excellent - I think she's located in the midwest area. 
In Nov. 07 I had the T3 surgery as K mentioned: Temporalis Tendon Transfer - I have complete facial paralysis, never had the nerve graft.  My right side is still paralyzed, but this surgery got rid of the 'droop', I if I bite down hard on my right side I get a closed mouth smile.   I think Dr. Byrne has done this on others who've had the nerve graft, he's at Johns Hopkins.

Write back if you have any ques., or just need to vent - we know how you feel.

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