Author Topic: Pitty Party  (Read 7869 times)

marg

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Re: Pitty Party
« Reply #30 on: January 05, 2008, 09:47:28 pm »
Well,  I'm ready to start answering to the name Popeye .... for the last month  - when I eat my left eye closes and I can feel my eyelid pull when I talk too.  I went to the Bell's Palsy site and looked at exercises to try and get this over board reaction to stop....but feel like I am fighting a loosing battle.  The only places I could find that really know about skinesis and Facial Neuromuscular Retraining...were in Canada and Georgia. 

     Does anyone know of a place closer to South West Washington that can help with this???  I first notice a 'pulling' feeling about 5 weeks after I started teaching  full time and then it got worse and got to the eye close thing when I got Broncitus (sp?) and coughed for 2 weeks solid.  I know 'they' say to avoid excessive facial exercises at the beginning...(because this may cause skinesis) and I'm wondering if having to stand in front of my class and talk 6 1/2 hours a day has been excessive... and caused this Popeye problem.   I keep hoping that it will go away but I don't know what to do.
     Thanks for any help.
Margaret
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

lori67

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Re: Pitty Party
« Reply #31 on: January 05, 2008, 10:20:39 pm »
There should be a list of places that specialize in facial PT on the Bell's Palsy website.  My PT here in Nashville mentioned it one day - I guess there was one PT intially in Wisconsin or someplace that really came up with the program - and then over the past few years, other PT's have gone to learn from her.  Those people should be listed on the site. 

I go in the next couple of weeks to my PT, so when I see her, I'll ask her if she knows anyone near you.

I have some mild synkinesis too and we're working on correcting it and keeping it from getting worse.  When I eat, the muscle that controls the bottom lip contracts and pulls it down, making it very difficult to keep food in my mouth.  When i try to blink, my cheek moves.  It is really annoying!   :-\

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

OMG16

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Re: Pitty Party
« Reply #32 on: January 06, 2008, 01:40:42 am »
Are you in Southwest Washington State?  If that is the case you can call Harborview or the UW and talk to a nurse in the rehab department and they can direct you to someone closer to home.  If you can not find the number let me know and I will get Dr Jaffe's number at harborview for you.  He was my Son's inpatient and outpatient rehab Dr at Childrens and he is also at Harborview.  PM me and let me know since I am new to this (I sometimes have problems) and the msg will go to me if I'm home or working.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Cheryl R

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Re: Pitty Party
« Reply #33 on: January 06, 2008, 08:19:30 am »
My surgeon saiys it inevitable that one will get synkinesis so don't be too hard on yourself.    He also though says to chew gum and Jackie the FT says that is a no no.      I also have it again after my facial neuroma surgery.      The eye closing type.         I don't get as shook this 2nd time around.   It bothered me after the first surgery.
                                                  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

DistressedDB

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Re: Pitty Party
« Reply #34 on: January 06, 2008, 09:24:02 am »
Back to the party...I think the cruise idea is great!!  It may be the only time I feel like I AM balanced!  Other complaints are that I listen to the TV too loud...well DAHHH...I can't hear anything but ringing and an ocean sound...why not make the ocean sound real!?!?!  I just got back from a 2 week Caribbean cruise over the holidays with my son...we had a blast.

Think on this...you're with a group of people who talk as loud as you do, can't hear anything, act tipsy even when they aren't and appear like they are habitually winking at you...it sounds too good to pass up!

Hope there are rough seas...if I'm going to have Vertigo, I'd like to have earned it...

BTW...I'll bring Mango Margarita’s (one of my favorites) to go with all this good Mexican food being promised.

As for the Pity - I did find out Friday that the CK I had 2 years ago appears not to have worked...I'll know real change in size this week, but to the naked eye, there is a section that appears to be growing (looks to be much more than normal swelling).
1.5cm X .09 cm - CyberKnife November 2005
April MRI shows small growth of 1.5 cm X 1.0 cm

marg

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Re: Pitty Party
« Reply #35 on: January 06, 2008, 05:33:35 pm »
Thank you to :  Lori, 16,and Cheryl.  I will look into those areas and see what I can find.  It helps to have a direction to look.  I talked with an occupational theropist (at my aunt's nursing home)today and she said I should go to a speech therapist....but I don't see how that will help.
    Anyway,  I will check into this more after my daughter leaves for Sweden on Thursday ( lots of last minute things to do )

Anyone else who has an idea about this ...please do  :)

Thanks again AN family,
marg
« Last Edit: January 06, 2008, 05:36:29 pm by marg »
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

lori67

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Re: Pitty Party
« Reply #36 on: January 06, 2008, 05:37:18 pm »
Sometimes the speech therapist can do facial PT too.  I know there are a few where I go that do both speech and facial stuff.

Tell your daughter to have a nice trip to Sweden!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.