Author Topic: Off to Wisonsin to See Jackie Diels  (Read 28699 times)

saralynn143

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Re: Off to Wisonsin to See Jackie Diels
« Reply #30 on: February 19, 2010, 10:14:32 am »
Very nice, Debbi. Great report and I am so happy for you. I plan to see the facial physical therapist in St. Louis, but a summer trip to Wisconsin might also be in the cards.

I don't have the mouth pulling up when I shut my eyes, but there is lots of room for improvement with my smile.

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

Nance

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Re: Off to Wisonsin to See Jackie Diels
« Reply #31 on: February 19, 2010, 10:38:34 am »
Wow Debbi- Amazing differences in the pics- I can't imagine how in four days your face turned into a buddha at rest- congratulations! Beuatific!  I'm so interested in it all and really want to know more!  Talk to you soon
Nancy
Nancy-diagnosed Jan. 2008
1.2 cm left side AN
Translab June 2008 at NYU with Drs. Golfinos and Roland
SSD Left ear, Left side facial weakness, BAHA Feb. 2009

salamander

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Re: Off to Wisonsin to See Jackie Diels
« Reply #32 on: February 19, 2010, 10:40:20 am »
Debbi,

I can only say that you look stunning and beautiful after your sessions!!  It really is amazing, and I am glad that you had such great results.

I remember feeling like my face was a pummeled piece of meat after visiting Jackie, but it sure makes a difference.  i don't know that I have been very successful at changing my synkinesis due to impatience with sitting and meditating in front of a mirror, but the stretching exercises continually help my face, especially as my face continues to change over time.  Different parts seem to come to life and thus get newly "cramped".  Having had training allows me to focus on that new area to keep it relaxed as it comes in.

Thanks for sharing the pictures!!

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

JerseyGirl2

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Re: Off to Wisonsin to See Jackie Diels
« Reply #33 on: February 19, 2010, 12:04:32 pm »
Debbi,

The difference in the "before" and "after" pictures is quite dramatic !! You look great, and I would say that your journey to Wisconsin was very worthwhile.

I'm sure that these good results will help you to stay very motivated to continue the stretching/exercise routines -- best wishes as you proceed!

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #34 on: February 19, 2010, 01:31:30 pm »
Thanks for all the votes of confidence! 

Samantha, I know what you mean about feeling like a pummeled piece of meat after 3 days.  I am pretty sure I actually bruised the inside of my cheeks.  I was probably being a little over-aggressive when it came to squeezing and pushing.  Still, the results are worth it. 

What is interesting is how much more aware I am now of what my face is doing and how it feels.  I had to run some errands today and notices as I was driving that my cheek was getting progressively tighter - when I looked in the mirror, sure enough, lip was pulled up.  However, by concentrating on relaxing my face, I was able to get my lip to drop and my cheek to relax.  Really amazing. 

Debbi (with my little Madonna-like smile)
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

sgerrard

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Re: Off to Wisonsin to See Jackie Diels
« Reply #35 on: February 19, 2010, 10:51:13 pm »
Debbi, I bet you really like that last picture. It is quite amazing! Maybe it is time for a new profile picture?  ;)

Great news, I hope it continues.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

LADavid

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Re: Off to Wisonsin to See Jackie Diels
« Reply #36 on: February 20, 2010, 12:29:55 am »
Wow, Debbi.  Amazing.   You've given me hope.
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

leapyrtwins

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Re: Off to Wisonsin to See Jackie Diels
« Reply #37 on: February 20, 2010, 09:56:52 am »
Debbi -

all I can say is "wow"!  What an amazing difference.

All this in just a few days time.

Truly incredible!

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

Kaybee

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Re: Off to Wisonsin to See Jackie Diels
« Reply #38 on: February 20, 2010, 10:06:17 am »
Debbi, I echo all these comments.  I truly appreciate all the details and photos you have shared here and on your blog that document your journey.  You are leaving quite a trail of breadcrumbs!
2 x 3 x 4 cm tumor removed at Methodist Hospital in Indianapolis 10/30/09
Left facial paralyis/SSD (showed first signs of improvement at approximately 6 months post-op)

Jim Scott

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Re: Off to Wisonsin to See Jackie Diels
« Reply #39 on: February 20, 2010, 04:28:12 pm »
Debbi ~

Although I'm at the tail end of a string of well-deserved compliments regarding the visible improvement in your facial control, my compliments are no less sincere.  I realize that what you've accomplished is due to hard work and intense concentration and I'm delighted to see the positive results, although likely not half as excited as you are!  Kudos to you, Debbi for your improvements and thanks so much for sharing the good results of your therapy sessions with Jackie Diels. I'm confident that you've given many people struggling with post-op facial issues much hope and inspiration.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #40 on: February 22, 2010, 01:24:04 pm »
Thanks so much for all the encouragement!  Faced with 2 plus hours a day of facial therapy, I definitely need to keep myself motivated and you've all helped me a great deal!

I will post more pictures here as things progress.  I am very happy to report that most of the sore spots on my chin are almost gone - first time I've been able to touch my chin in a long time that it hasn't felt like there is some big icky subterranean pimple under there (sorry to be so graphic, but that's just what all those spots on my face feel like!)   My cheek is till tightening up during the day, but its a bigger muscle and will take more time to "de-cramp."

Debbi
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

moe

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Re: Off to Wisonsin to See Jackie Diels
« Reply #41 on: February 24, 2010, 11:02:51 am »
Debbi,
The photos are truly amazing. The before and after from just ONE day- priceless.
Thanks for sharing.
This just shows how you may "look" ok (to us you look great), but what you are feeling is hard to describe to others.
The symptoms you were describing prior to seeing Jackie- Yikes, I had no idea.
Keep up the good work. Go Debbi, GO!
You will need a cheer leading team because two hours a day is a lot of time, especially with working and such.
Keep it up :) :) :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

m4guzman

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Re: Off to Wisonsin to See Jackie Diels
« Reply #42 on: February 25, 2010, 09:46:43 am »
Hey Deb

You look great!   Every time I read your comments,  I think of my self.  We are so in the same boat.  From the same Doctors to the
same Facial therapist.  Everytime you touch my chin, I feel like there is a zit waiting to happen.  When I explained this to the doctor he said
he never heard of this.  My cheek muscle is pulling so tight that He suggested I go for botex.  I would rather try something else.  You look great
and give me lots of hope as I approach my 1 year mark.  (I was also told this would only last a couple of weeks after surgery)   Now its is almost
a year later and the  facial therapist put me at a 3.

Looking forward to talking to you soon.

Marybeth
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

amymeri

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Re: Off to Wisonsin to See Jackie Diels
« Reply #43 on: March 03, 2010, 12:39:27 pm »
Those pictures speak for themselves!  Fantastic!

I think we have very similar issues.  My face feels like a Charley horse all the time.  Especially the cheek and it hurts~ 

Can you tell me a little about the chin and cheek work you are doing?

Thanks!

Amy
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #44 on: March 04, 2010, 10:32:59 am »
Thought this would be a good time for an update.  First, for those who expressed who secretly shuddered when I mentioned 2 hours of facial stretches and another half hour of exercises - I am now doing 1 to 1 1/2 hours of stretches (two sessions of 30-45 minutes each).  Most I can do while I am watching TV, so it goes pretty quick.  I have had to establish a routine around this, otherwise it wouldn't get done.  So, each day starts with stretching the face, and that is also how each day ends.  Not so hard at all!

What is most noticeable to me now is how much BETTER my face feels!  I guess that I had gotten so used to the constant tightness and soreness that it didn't even really register anymore.  Kind of like any other very low level pain, you get used to it.  Now, however, I am starting to feel my face loosen up and it just feel so good!  My forehead has gotten much better, only a few sore spots left and that eyebrow has dropped considerably.  Only one sore spot left on the chin.  And, my cheek is slowly coming un-cramped!    ;D ;D  Wow - this is what "normal" feels like!!!  I am also starting to see some small improvement in the neck tightness.  That's a hard muscle to stretch, so it will take awhile.

I've emailed Jackie with a few questions and she has been great about getting back to me with encouragement and suggestions.  She's really terrific and I can't say enough positive things about her.

Amy, to answer your question, alot of the cheek stretching involves getting several fingers of one hand in that side of my mouth, while keeping the thumb pressed on the outside.  By gently pinching the cheek between the thumb and fingers and pulling down towards the mouth, I can get a good stretch going.  I do that all over the cheek area and stop and hold when I feel a thickening or feel a sore spot.  Right now, my right cheek is still much more dense than my non-AN left side, but I am seeing changes.  As for the chin, what i do there is press  forefinger at different spots on the chin - whenever I find a sore spot, I just press and hold until the soreness subsides.  I'm also spending a lot of time on the long muscle that runs down the front and side of the neck since it pulls the chin and mouth down. 

Slow and steady wins the race...  Yes, yet another hard-won lesson in patience for one of the planet's most impatient people!

Debbi, working on my grin...
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