Author Topic: Help! Synkinesis has started. Seeking NMR therapist in the PNW  (Read 31106 times)

Chambo

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #45 on: October 10, 2008, 03:36:31 pm »
Chambo,

Great news! :)

DHM

Thanks DHM.

My physio will be so pleased. She was trying her best to calm down the overactive neck/chin muscles in order to improve functions elsewhere, but it was a slow process. BANG, a couple of botox injections and 48 hours later, full smile. Never thought i'd have so much love for botox. And the botox neuro knew of my Physio - he said she was the only one he was aware of doing AN related physio in Melbourne. At least I was seeing the right person...
3.5cm+ LS AN fully removed via Translab surgery on 28 June 2006.
Prof Kaye (Neuro)/Mr Briggs (ENT) at Royal Melbourne Hospital (Melbourne, Australia).
1st post surgery MRI (Feb 07) revealed NO regrowth/residual.
d.o.b. 5 Oct 1978

lifeisgood

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4 years post surgery and still improving
« Reply #46 on: October 12, 2008, 10:29:49 pm »
Hi there,
This recovery thing is sure a journey.  I totally relate to the synkinesis.  I also thought at 6 months I was looking pretty good until I started looking at pictures and my eye was closing more on the right.
I definitely do NOT have the same smile as before, but, my face is getting better.
Ladies, I definitely recommend a slight bang to "hide" the expression lines.  I have no lines on 1/2 my face but didn't think bangs would be a good thing for me.  It's turned out great. 

I visited Jackie Diels in Wi around 12 months post surgery.  I really thought she was helpful.  She made me realize that what is causing the imbalance is not too little movement on the AN side but TOO MUCH!  That was initially hard for me to get.

I wrote an article on this journey a few years ago and all I have to do take a look at the almost 100% paralyzed side of my face 1 month later and there is a lot of gratitude.

I will be honest, I am self conscious.  I am going to read books to my little kindergartners class twice a month and I know that my face looks different.  Little kids pick up on that thing.  I always wonder if they will at some point in time ask my son or say something to me. 
I'm 44 and you think I would just get over it but sometimes it is hard.

Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

marg

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #47 on: October 13, 2008, 10:47:49 pm »
Mary,   
     I just had to reply to you.  I totally understand about the synkinesis - and being self-conscious.  I am a 2nd grade teacher and this is  my second group of children since my brain surgery.  The facial paralysis is much harder to deal with than my SSD or balance issues - because everyone can see it.  I try to forget about my facial issues every day as I stand up in front of 27 2nd graders plus everyone else at school.... some days I do better than others..... ( I didn't do very well last Sat. my sister-in-law gave me a picture of her, another sister-in-law and me at her mom's memoral service in August.  My facial paralysis looked so bad that after she left I tore up the picture and threw it away).  Anyway, back to my classroom of kids.... I have talked to them about my SSD, balance and facial paralysis.  They have no problem with it - and if they have questions about it I just tell them the facts and we go on.  I'm sure I could give you much better info. but it has been a long day and I'm too tired to think well right now.  Just mainly wanted you to know that there are others of us who understand ..... and care.
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 !

LADavid

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #48 on: October 14, 2008, 05:46:15 pm »
Excellent news, Simon.  I'm starting Botox Treatments on December 5th -- really looking forward to it.  How are your treatments going DHM?
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #49 on: October 14, 2008, 08:11:40 pm »
In a week I will have botox injection #2- I'll update you once that starts to work...

Yesterday I had to wear the eye weight and the face was all tight  :-\ ... today I did not have to wear it and my face was relaxed... :) it oscillates

How are are you doing with yours- David?

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!

LADavid

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #50 on: October 16, 2008, 06:44:05 pm »
DHM
When I think about the progress day to day, I see no improvement.  But when I compare it to last Spring, it's a huge improvement.  I have an appointment with Theresa England tomorrow.  She's better at spotting where I am improving and where I need work.  The Botox starts in December.  I'm looking forward to it.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

mimoore

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #51 on: October 16, 2008, 07:12:32 pm »
That is so true David. I would sit in front of a mirror each day and get so bummed. I started taking pictures first every two weeks then once a month and when I feel down I pull out the pictures and realize I am getting better. I don't look so tired, tone is geting better... others would say "Oh you are looking so good" and I would think, yah whatever, you are just trying to make me feel better, thanks but I don't believe you. I need to see for myself and with the pictures I can.
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.

4cm in Pacific Northwest

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #52 on: October 17, 2008, 08:38:27 am »
Still pictures “sort ofâ€? give you an idea.  :-\

What is the real documentation is “videoâ€?. Because my NMFT is out-of-state I make videos, following her script, in the same place with the same lighting each time. I then send these in the mail – she views them and we discuss the progress on the phone. This way we see what movements are improving and what are still off.  Soon we will be set up for long distance secure video conferencing... so we don’t have to wait for the mail/courier delay. (Yeah -lets here in for the engineers who developed the internet!!)

EG
 In the earlier days I would stick out my tongue and it would pull to one side- now it is straight. When I used to purse my lips my eye closed… now I can now purse my lips without lower eyelid involvement… “ifâ€? I concentrate.

 I highly recommend making video tapes… it also gives you feed back of what abnormal movements need correcting.

E.g.
When I close my eye I cannot see what my cheek is doing in the mirror- but I can in the video tape. My cheek still pulls up. I was not aware of this until I viewed the video… so I went back and have decided to keep wearing the eye weight until I have this movement nipped-in-the-bud. My eye does not need the eye weight- but my cheek still does because I am using it to get full eye closure- which is increasing abnormal moments (and perhaps abnormal nerve wiring to the muscles- i.e. motor neurons)

It is much like a dancer practicing for a whole season in front of a mirror- then moving on to dress rehearsal not knowing how in sync they are- or not.  Often I would video (film) my dancers before their dress rehearsal stage …so they can see what others see. It always amazed me how much they improved, and finally listened to me, “afterâ€? they saw for themselves -the video.

When I first viewed video of how bad my synkinesis was I was mortified and it was a harsh experience…. However it motivated me to work much harder, and more diligently, at the prescribed exercises. I really see NMFR much like dance training… you have to keep repeating the movement until it becomes automatic in the brain. Most people cannot do a pirouette immediately- it takes training and practice- particularly if you are to do one in sync with other dancers beside you. The facial muscles are much like this as we try to get one side to match the other… it takes practice.

“Still photography� will not show you the “animation� of the face. I find that I can get a better still picture now of my smile but what I really want is more normal facial movement so people don’t look at me so strangely when I talk to them. Still photography can lie - however the raw video footage cannot. It helps you to see what others see and forces you to work more at it… Video is providing me with the honesty I want even if at times it is painful for me to watch my videos… Nevertheless this month’s video showed much improvement from previous months… This is all going at a snails pace. But hey here in the PNW I know that the snails eventually gets there – being that my bedding plants were eaten up as soon as the rains started up again- by snails. Snails do eventually reach there destination…

DHM … doing the snail face dance    ;D  ;)
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!

mimoore

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #53 on: October 17, 2008, 08:54:12 am »
GREAT ADVICE! It would have been hard for me to discover the tiny blink without video.
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.

LADavid

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Re: Help! Synkinesis has started. Seeking NMR therapist in the PNW
« Reply #54 on: December 05, 2008, 07:45:45 pm »
I started Botox treatment today!  Yea.  Three shots in the eyelid and three in the neck.  Ouch.  But I was happy to get it started.  DHM and Simon, how are you both doing?

I can't wait to see results.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments