Author Topic: Off to Wisonsin to See Jackie Diels  (Read 28698 times)

leapyrtwins

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Re: Off to Wisonsin to See Jackie Diels
« Reply #15 on: February 09, 2010, 08:48:30 pm »
Don't know about the weather in Wisconsin, but here in Illinois we're getting a boat load of snow  :P

Hope everything's cleared away by the 14th, Debbi.

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

pjb

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Re: Off to Wisonsin to See Jackie Diels
« Reply #16 on: February 10, 2010, 11:12:08 am »
My thoughts and prayers will be with you.


Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #17 on: February 13, 2010, 09:37:52 am »
Thanks, all!  It looks like the weather on both ends of the trip are going to cooperate, at least on the outbound trip.  So, with a bit of luck, we'll be having Valentine's dinner in Madison tomorrow night and I will be in Jackie's office bright and early Monday morning.    :)

Pictures when I return...

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

leapyrtwins

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Re: Off to Wisonsin to See Jackie Diels
« Reply #18 on: February 13, 2010, 09:58:07 am »
Yeah!  Looking forward to pictures!  Hope all goes well.

I've heard Jackie's fantastic  ;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

moe

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Re: Off to Wisonsin to See Jackie Diels
« Reply #19 on: February 13, 2010, 02:09:53 pm »
HAPPY HEART DAY TOMORROW!
And good luck with your treatments.
Can't wait to hear the outcome.
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

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #20 on: February 16, 2010, 07:48:37 am »
Just a quick update after Day One with Jackie.  We spent 5 hours with Jackie yesrterday - lots of work, but I left feeling SO optimistic!  I guess I was really afraid, deep down, that she'd look at me and say that there's nothing to do. So when she told me that she believes alot of my facial movements are being causes by hypertonic muscles (which can be totally fixed) - well, I'll admit that I was closer to tears than I've been in a long time.  The morning was spent evaluating my facial movement, taking lots of pictures and video. The afternoon was spent teaching me various "stretches" to start trying to work the knots out of my various facial muscles. 

My head is so full of info right now, that I could probably write pages and pages (but I'll spare you.)  I will update again either tomorrow or when we get back to NJ.  We've got 4 hours with her today and another 3 tomorrow. 

I am getting lots of pictures, so will be able to show you what we've been able to accomplish February.  More later.
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

Kaybo

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Re: Off to Wisonsin to See Jackie Diels
« Reply #21 on: February 16, 2010, 07:56:22 am »
GREAT news, Debbi!  i have been on pins & needles wondering how it is going!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

JerseyGirl2

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Re: Off to Wisonsin to See Jackie Diels
« Reply #22 on: February 16, 2010, 08:50:31 am »
Debbi,

Sounds like wonderful news! I hope the next two days continue the trend.

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

Jim Scott

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Re: Off to Wisonsin to See Jackie Diels
« Reply #23 on: February 16, 2010, 01:21:46 pm »
Debbi ~

Thanks for the update - and the positive news about your facial mobility prognosis from Jacki.  May the rest of your visit continue to be as productive as your first day. 

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.

leapyrtwins

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Re: Off to Wisonsin to See Jackie Diels
« Reply #24 on: February 17, 2010, 07:54:39 am »
Debbi -

this sounds very encouraging. 

I'm thrilled that Jackie had good news for you.

Looking forward to the pictures,

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

ppearl214

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Re: Off to Wisonsin to See Jackie Diels
« Reply #25 on: February 17, 2010, 10:19:21 am »
Deb! GREAT news! I'm soooo thrilled this path is working out and can't wait for the updates!

Hugglez to you and Willie.... looking forward to the updates!
xo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #26 on: February 19, 2010, 09:03:13 am »
Hi All-

Well, I am back and ready to share some pictures!  The rest of the trip went very well - lots of hard work, but much to be optimistic about.  Yes, I have some synkinesis, but the good news is that a lot of the facial contortion is being caused by tight and knotted muscles.  And, those can be fixed!  The nerves that healed wrong will always be wrong, but I will be able to dramatically minimize their effect on my face.

This trip has been such a good experience for me.  I have been struggling with the sensations in my face for almost a year and a half, never really knowing exactly what it was that didn't feel good - or in some cases, hurt.  Now, I know!  And, no wonder my face felt sore - I have the equivalent of 20 or 30 charlie horse cramps all over my face!  Sure explains a lot, doesn't it?

I came home with an hours' worth of facial stretches which I need to do twice a day (so two hours daily) and about 20-30 minutes of isolation movements for my lips and eyes.  What is amazing is that I can already see a difference!  Here are a couple of "before and after" pictures.  These are taken 4 days apart, so you can see how much improvement I've already gotten.  

Here is my eye closure the first morning in Jackie's office.  You can see that my lip is pulled up and you might also notice some knotty looking spots in the muscle down the side of my neck (the platysma).  


In the pictures from this morning, you can see a lot more symmetry and almost no pulling on my mouth!!


Now, here is my "smile" picture from the first morning.  You can see that my chin is dimpled and my right eye is tight.  You can also see the muscle on the side of my neck kind of sticking up.  That whole side of my face is pulling and tight.


And, now this morning!  In fairness, I have to smile much smaller right now in order to control the muscles and to keep the rest of my face more relazed.  But, with work, I'll be able to smile much bigger.  You can already see alot more symmetry to my face.  


Also notice in the before pictures that my right eyebrow is higher than my left.  I wasn't even aware of that until we got started.  That pulling is/was also caused by knotted muscles.

So it is fair to say that I am a BIG fan of Jackie's!  This experience was SO much different that the facial therapists I've seen in the past who really focused on facial exercises.  Jackie focuses much more on facial stretching which, in my case, really gets to the root of what is going on.  

If anyone reading this wants to know more about the specifics of my time with Jackie, just PM me - I am glad to talk on the phone, email, or whatever.  

« Last Edit: February 19, 2010, 09:05:25 am by 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

lori67

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Re: Off to Wisonsin to See Jackie Diels
« Reply #27 on: February 19, 2010, 09:13:02 am »
Holy cow!  That is amazing!  I'm so happy for you Debbi.

Ugh, now I may have to go to Wisconsin myself.  I'll wait until the snow is gone though.  I wonder if she'd prefer to come to Virginia Beach for an all expenses paid vacation...

You looked great before, but it must feel so good to have your smile back!

Keep smiling!
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.

Cheryl R

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Re: Off to Wisonsin to See Jackie Diels
« Reply #28 on: February 19, 2010, 09:13:51 am »
Debbi, You really can tell the difference and I am very happy for you!      Very good pictures and good that is being such help to you!        Jackie is a sweetheart and how she gives credit to the patients for the work it takes.
                                      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

ppearl214

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Re: Off to Wisonsin to See Jackie Diels
« Reply #29 on: February 19, 2010, 09:21:08 am »
debbi

As gorgeous as you are, even before your trip to Jackie.... what a testimony of her work!  You look stunning now... (you looked stunning as well before), but so thrilled to see that the trip has paid off!

thanks for sharing these pictures. A true inspiration for others seeking info/help with this issue.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"