Author Topic: Need Synkinesis Advice/Input  (Read 20436 times)

LADavid

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Re: Need Synkinesis Advice/Input
« Reply #15 on: April 11, 2008, 12:54:55 pm »
K
Being a Presbyterian boy, I don't know.  It seems all my Catholic buddies ever talked about was the nuns smacking them on the hand with a ruler.  Weird memories.
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

Debbi

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Re: Need Synkinesis Advice/Input
« Reply #16 on: April 11, 2008, 01:10:18 pm »
Yes, but if someone if a black cape whacks you enough times on the hand with a ruler, you forget all about the facial stuff...

Married to an Italian, so second hand only...

Deb
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

leapyrtwins

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Re: Need Synkinesis Advice/Input
« Reply #17 on: April 11, 2008, 03:14:22 pm »
can nuns fix your face?????????????
K

No, but they can pray for you.  But David's got all of us to do that for him  8)
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

LADavid

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Re: Need Synkinesis Advice/Input
« Reply #18 on: April 11, 2008, 03:19:02 pm »
Thanks, Jan.  That means a lot.
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

lori67

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Re: Need Synkinesis Advice/Input
« Reply #19 on: April 11, 2008, 10:13:31 pm »
A lifetime Catholic school survivor here, telling you that nuns, cannot, in fact, fix your face.  They can injure knuckles, roller skate down school hallways in their habits and instill a sense of guilt very well though.  I think I'm about to be struck by lightning.

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.

LADavid

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Re: Need Synkinesis Advice/Input
« Reply #20 on: April 11, 2008, 10:21:08 pm »
Lori
My Cathlic buddies did much worse and they survived.  You're safe.
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

lori67

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Re: Need Synkinesis Advice/Input
« Reply #21 on: April 11, 2008, 10:31:19 pm »
Phew... that's a relief....   :-\
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.

4cm in Pacific Northwest

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Re: Need Synkinesis Advice/Input
« Reply #22 on: April 12, 2008, 09:39:37 pm »
 :D
I am trying to envision an entire school faculty of nuns in full habits- roller skating down the hallway.
 :D
And I cannot stop laughing

THAT Lori- is hilarious!

Daisy Head Mazy
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!

lori67

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Re: Need Synkinesis Advice/Input
« Reply #23 on: April 13, 2008, 12:03:23 pm »
Yes, it was quite a sight!  I can still picture it like it was yesterday!  I think they sent all the slightly insane nuns to my school.  Or maybe they weren't that way when they got there - maybe the kids drove them to it...

We had another one in high school who used to walk up the the front of the line for the snack table with a tote bag and "steal" all the cookies she could fit into the bag.  Good thing those were loose fitting habits or she would have been letting out the waist line weekly.

Ah.. memories...   :o

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.

leapyrtwins

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Re: Need Synkinesis Advice/Input
« Reply #24 on: April 13, 2008, 07:15:09 pm »

We had another one in high school who used to walk up the the front of the line for the snack table with a tote bag and "steal" all the cookies she could fit into the bag. 

Well you know in the "old days" nuns had to take a vow of poverty so she probably didn't have any money of her own to buy cookies  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Chambo

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Re: Need Synkinesis Advice/Input
« Reply #25 on: April 15, 2008, 10:14:02 pm »
Hi LADavid,

I only started PT a few months ago as my wedding was coming up!

I must admit, I wish I had have started PT earlier. It is very important for synkinesis. I have found a very good PT in Melbourne (I think I found her through this site initially thank god) and she has been awesome.

She gets her fingers inside my mouth and massages the tight or knotted muscles just like if you had a tight back or hamstring - same philosophy.

She also positions my next in different places to stretch the neck muscle which causes so many of the synkinesis issues. If you can isolate this muscle, you're well on your way. A good one was doing the face exercises whilst pushing you chin back and moving your head/neck down.

Every time I see her I notice 1 or 2 immediate improvements.

After nearly 2 years post op, I am now smiliing in photos and just smiling more generally. I am going to continue to see her as I reckon she can get me back to 100% or thereabouts (i reckon i'm nearly at 90% and was at 75% 3 months ago).

Forehead is next which is the stubborn one but not that phased - saves wrinkles (am turning 30 this year! hehe).

Look fwd to seeing you on the big screen soon!

Cheers

Simon
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

LADavid

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Re: Need Synkinesis Advice/Input
« Reply #26 on: April 16, 2008, 02:59:23 pm »
Hi Simon

Thank you for the input and the description of your physical therapy.  I am glad to know that it is beneficial and that you are improving.  That's very encouraging.  I have eye surgery coming up in a couple of weeks and once I get that out of the way, I'll take on the Facial PT. 

After four months of paralysis it was very frustrating to have the first movement be the wrong one.  I'm glad to know there is hope.

Now if I could only figure away for SAG insurance to fund a trip for me to Melbourne... ;)

Unfortunately, you won't be seeing me on the big screen anytime soon.  Possibly the little screen on re-runs of American shows.

Thanks again.
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

CROOKEDSMILE

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Re: Need Synkinesis Advice/Input
« Reply #27 on: May 03, 2008, 06:32:54 pm »
David,
I also have synkinesis. I start PT in July. They will most likely botox the cheek which is pulled up causing a goofy snarl and if I try to relax my lip pulls up. When I smile the neck muscle sticks out causing my smile to be more like a frown. When they botox those areas then it will allow the proper muscles to work. They say that the regeneration of the nerve is there, muscles are working but are impeded by the tug of war by the wrong muscles kicking in due to synkinesis. Botox and PT do wonders I hear! I can't wait to start. Good Luck.
Angie-crookedsmile

LADavid

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Re: Need Synkinesis Advice/Input
« Reply #28 on: May 03, 2008, 09:23:03 pm »
Hi Angie

My face is going through crazy things too.  I start physical therapy this Thursday.  I'll keep you posted on my results.  Hoping for the best for us.

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

4cm in Pacific Northwest

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Re: Need Synkinesis Advice/Input
« Reply #29 on: May 05, 2008, 03:05:56 pm »
David,

Who is the neuromuscular facial retraining physiotherapist that you found there in California?

Daisy Head Mazy
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!