Author Topic: survery....Facial paralysis.  (Read 13381 times)

4cm in Pacific Northwest

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Re: survery....Facial paralysis.
« Reply #30 on: July 15, 2009, 11:14:04 am »
epdjon,

Cyber HUGS!

Know I had this too once the movement returned ... it is because the muscles are weak from the period of no action. I can now eat and drink fine. I bought a Sigg bottle for water with a toddler cap. (The Paddington Bear logo makes good lunchroom conversation). I suggest that if you can practice eating in front of a mirror ( this was a shocker for me when I first did this and saw the abnormal movements) ... as this will give you feed back so you can retrain your facial muscles.

Are you seeing a neuro-muscular facial retraining therapist?

Know that I can now drive and sip a Latte at the same time... I can even ride a bike and chew gun at the same time.

Recovery does happen. It will come slowly... at snails pace ... but slowly.

Hang in there.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

epodjn

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Re: survery....Facial paralysis.
« Reply #31 on: July 17, 2009, 11:24:27 am »
Thansk, it's good to know someone else has had the same problems and overcome them. I start with the neurofacial retraining on the 27th. It's taken over a month to get into this program because this therapist is the only one in town, and it's a rather large town!
I'm almost scared to eat in front of a mirror. I know from the looks of others that isn't not pretty. But I will try it and see if i can start some self-help before my real therapy starts. I'm game for anything at this point. It's so disappointing to lose ground just when you are starting to make progress. But I will be drinking out of a cup again.
Here's another weird thing that started happening during the week. Now my weak AN side of my mouth, that used to droop, is now HIGHER than the normal side. The AN side of my mouth is starting to have that permanent smile look kind of like the Joker in Bateman. What next??
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

4cm in Pacific Northwest

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Re: survery....Facial paralysis.
« Reply #32 on: July 17, 2009, 11:43:07 am »

Here's another weird thing that started happening during the week. Now my weak AN side of my mouth, that used to droop, is now HIGHER than the normal side. The AN side of my mouth is starting to have that permanent smile look kind of like the Joker in Bateman. What next??

Epodjn,

In reading your reply I am sad to say you are showing the early signs of "synkenisis". The nerves have cross-wired … the smile crease on the palsy side is one of these signs. Your muscles are becoming hypertonic. The sooner your therapist sees you – the better. In the mean time do NOT message that area but just apply heat when the face starts too get tight. Doing the wrong messages, without proper guidance, can make this worse.

These links explains "synkenisis"

http://www.answers.com/topic/facial-synkinesis
&
http://en.wikipedia.org/wiki/Synkinesis

Here is the bells palsy website on this
http://www.bellspalsy.ws/symptoms.htm

&
http://www.bellspalsy.ws/residual.htm

What can be done?
http://ophth.wisc.edu/publications/fs_summer_04.pdf



MORE HUGS

DHM

« Last Edit: July 17, 2009, 11:48:07 am by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

epodjn

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Re: survery....Facial paralysis.
« Reply #33 on: July 23, 2009, 05:24:06 pm »
Thank goodness i start therapy on Monday. It's getting worse. Of course, like with all nerve stuff, it's slow, but day by day I see difference that I don't like. I'm grateful for the movement but I hope with therapy to get it under control so I can move my face the way I want, not this weird way. Thanks DHM, for your continued support. I feel like you are always there and know just what I'm going through, and have good advice. Thanks for the links!
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

4cm in Pacific Northwest

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Re: survery....Facial paralysis.
« Reply #34 on: July 25, 2009, 01:40:31 pm »
Thanks DHM, for your continued support. I feel like you are always there and know just what I'm going through, and have good advice. Thanks for the links!


Hey you are most welcome... that is what the ANA is all about.


Sorry for the delayed reply here- I just got back from Crater Lake... and was off line and camping... (Know that life resumes!)

Hang in there and keep us posted on your progress.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

epodjn

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Re: survery....Facial paralysis.
« Reply #35 on: July 31, 2009, 02:10:07 pm »
Crater lake is such a beautiful place. We went there when I was a kid. We are avid campers. We spend our weekend at my dad's property in the Unita's. It was so nice to get out of the heat. I started my therapy on Monday and right away she showed me what I needed to work on to correct my drinking problem. I've been doing the exercises for about 30 minutes a day and can see a difference already!! And the "joker-ish" look is getting better too!
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

saralynn143

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Re: survery....Facial paralysis.
« Reply #36 on: July 31, 2009, 02:20:02 pm »
. . . right away she showed me what I needed to work on to correct my drinking problem.


that struck me as funny.

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

epodjn

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Re: survery....Facial paralysis.
« Reply #37 on: July 31, 2009, 02:23:36 pm »
That is funny . . . . .and I didn't even realize it when I typed it. But seriously, I had progressed from being able to only drink from a straw to drinking from most anything. Then when the regeneration started my face started changing and I was back to the straw. Today I drank a whole glass of juice from a glass with no dribbles. Woohoo!!! Therapy is really working (Isn't it funny the things we celebrate??)
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Jeanlea

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Re: survery....Facial paralysis.
« Reply #38 on: August 04, 2009, 12:15:58 pm »
Epodgyn,

What does your therapist have you do to help you drink better?  I'd could really use some tips.  My current method is to hold up the corner of my mouth with my finger.  I'm sure it looks rather strange.  If I don't do that it tends to dribble out the AN side.  I have no feeliing there either so I don't always realize it's dripping until it's on my shirt.

Thanks,

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

salamander

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Re: survery....Facial paralysis.
« Reply #39 on: August 04, 2009, 03:30:36 pm »
I was wonder that too today when I couldn't drink from a straw.  Since my mouth has started moving, it is now higher than the other side and I am also having a "drinking problem."   ;)

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

epodjn

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Re: survery....Facial paralysis.
« Reply #40 on: August 04, 2009, 04:38:21 pm »
For Jean, Samantha, and anyone else with a drinking problem, here is what my therapist had me do. While looking in a mirror, hold your mouth as symetrical as possible. With your mouth closed and with your check relaxed, here's the tricky part, pull your bottom lip downward using only your lip muscles. Jean, if you don't have any feeling or signs of nerve regeneration this probably won't work for you. Samantha, your dribble problem sounds like mine. It was caused because I was tensing my check muscles and it was making the corner of my mouth pull up leaving a gap for water or whatever to dribble out. My face was doing the same thing as your was. My mouth was pulling up more and more each day. I learned it was because when I was stressed I tensed up that check muscle and it cause my mouth to look unsymetrical even at rest. It's really tricky to learn to relax it during the day. I have to think about it all the time. But I can see such a difference when I do. If you haven't had any neuromuscular therapy I would highly recommend it. I learned so much the first session!!! It has already made a diffrence in my life. My face was feeling so tight and uncomfortable and I didn't know how to relax it. With massage and the right exercise my face is starting to feel somewhat normal again, at least not like I've been wearing a mud mask too long!! I can't say enough about this therapy. PM me if you need help finding a therapist or help with insurance. Mine fought it at first but now they are paying.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!