Author Topic: Off to Wisonsin to See Jackie Diels  (Read 29524 times)

Jim Scott

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Re: Off to Wisonsin to See Jackie Diels
« Reply #45 on: March 04, 2010, 03:07:30 pm »
Debbi ~

Fortunately, my grin works pretty well and I'm using it now as I read your post.   ;D   Thanks for the update and the great news within!

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.

nteeman

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Re: Off to Wisonsin to See Jackie Diels
« Reply #46 on: March 04, 2010, 06:22:34 pm »
Debbi,

Reading this thread today definitely made me smile.  I can't wait to see you at the next brunch in May.

 ;D
Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
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odirish

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Re: Off to Wisonsin to See Jackie Diels
« Reply #47 on: March 19, 2010, 02:42:07 pm »
Debbie,
I'm new on here, so forgive me if i missed anything. You had facial therapy? How long was it until you were able to have some symmetry? There is a facial therapist in Pittsburg, about 4 hours from me. I went to see him once and drove home in such a terrible rainstorm, that I was afraid to drive out there again. Can you give me some information on the therapy? He had put things on my face that was hooked to a computer to measure any movement. He also said that I do have movement, it's as if the nerves are asleep. Maybe I should try to go out there again. ???

Mary Ann

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #48 on: March 31, 2010, 02:14:49 pm »
Quick update --

First, in case you are wondering, I did not ignore Mary Ann's questions  ;D,  just answered her privately.

So, it's been about six weeks since I got back from seeing Jackie and I must say that I am VERY pleased with results.  We were having dinner the other night and Willie looked at me and said "you know, I haven't heard you slurring lately."  Holy cow!!!  I've been slurring for nearly two years so that's a big deal!  I still do have a slight tendency to slur if I am very tired, but nothing like even two months ago. 

I am also seeing improvement in how my lower lip is moving (yay!).  And, my cheek is definitely starting to relax, which means that my snarl is getting smaller.  I think I am even seeing some slight lines on that side of my forehead (I know, what woman in her right mind is excited about wrinkles!!)  The chin is still dimpling like crazy, but I am working on it and practicing patience... my mantra.

I promise to post pictures again soon - just wanted to let those who are following know that results have been all that I had hoped for (and more!) 

Debbi (smiling)
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

nancyann

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Re: Off to Wisonsin to See Jackie Diels
« Reply #49 on: March 31, 2010, 03:49:51 pm »
"When you're smiling,  when you're smiling,  the whole world smiles with you !"   GREAT NEWS Debbie,  I'm so happy for you !
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Kaybo

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Re: Off to Wisonsin to See Jackie Diels
« Reply #50 on: March 31, 2010, 04:05:56 pm »
outstanding!!  :o)
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!

margen

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Re: Off to Wisonsin to See Jackie Diels
« Reply #51 on: April 02, 2010, 08:18:12 am »
Debbi - Thank you for posting your experience with Jackie Diels.  I'm looking forward to my appointment in July.  My surgery was 2-1/2 years ago and my face looks normal to most people.  But I still have the same issues you have with the "sneer" and the way my right eye closes when I smile.  There's also a general tightness on the entire right side of my face and my neck muscles are affected as well.  People don't understand how these issues affect your life and confidence level.  The attitude I'm finding is - "you've come so far, why don't you just leave it alone?"  I wonder if they would think that if it were their faces?

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #52 on: April 14, 2010, 06:32:58 am »
Just a quick update ... Yesterday my parents arrived for a visit.  Have not seen them since Christmas.  They took one look at my face and said "wow! that's amazing!"  They said that they see a huge difference in the way my mouth moves now when I talk.  And, the other day, I was able to keep the right side of my mouth from gaping open when I was eating - that's HUGE!!!   ;D

I'm a happy camper.

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

nanramone

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Re: Off to Wisonsin to See Jackie Diels
« Reply #53 on: April 14, 2010, 06:54:37 am »
Debbi - I just saw this thread - thanks - the pictures and story are great -

I will like to do a similar thing post treatment to help others with their fears. I am finding more often than not that this forum is my greatest source of support right now.

take care~

Nancy

Cheryl R

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Re: Off to Wisonsin to See Jackie Diels
« Reply #54 on: April 14, 2010, 07:46:34 am »
Debbi,  You deserve to be a happy camper too since you have been doing the work to help it along!      Have a good family time.    I met my sister after my appt Tues as hadn't seen her since Dec as we met in Iowa City and had a nice visit.  She is a hour away from there.
                                                             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

Debbi

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Re: Off to Wisonsin to See Jackie Diels
« Reply #55 on: September 30, 2010, 02:45:57 pm »
Rather than starting a new post, I thought I'd just add to this one ...  I just returned from my second visit to Jackie this week.  The progress has been terrific!  I have no more pain in my face and most of the spasms and hyptertonicity are gone, gone, GONE!   ;D ;D

This trip was 2 days, 5 hours the first day and 3 the second.  Started with an evaluation to see what had changed since my last visit in February.  We then started doing some "fine tuning"... I still have a little bit of spasm in my neck and forehead, so am doing some additional stretching work on those areas.  My cheek has almost completely settled down so there is very little pulling up on that side of my mouth now (yay!)  I have made very good strides on the synkinetic movements (chin, mouth, eye) and came home with some new stuff to do to continue retraining those muscles.  What really surprised me was how much better my right eye is now.  When I was there before, that eye would try to close every time I moved my mouth - talking, eating, etc.  Now, the eye is staying nice and wide almost all the time.  I can still feel some pulling on my lower lid, as if that little muscle is still trying to make the eye squint up when I talk or eat, but it is SO much better!  I am learning to control the chin dimpling very well, too. 

I wish I had not waited quite so long to go see Jackie.  However, I am thrilled at the progress.  Don't believe me?  Take a look...
Here is what I looked like in February when I closed both eyes (the right eye still doesn't always fully close)
 

Now, here is the photo that Jackie took this week with the eyes closed...


Here is what happened in February when I tried to do a closed-mouth smile...


And now in September...


By the way, I am 2 years, 5 months post op.  I hope that this helps some of you out there who are trying to deal with facial problems and synkinesis.  NMFR works, BUT only if you work at it.  For me, the results are worth every minute of the work!

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

Jim Scott

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Re: Off to Wisonsin to See Jackie Diels
« Reply #56 on: September 30, 2010, 03:12:30 pm »
Debbi ~

I tend to be a bit  fairly  O. K., relentlessly verbose sometimes but your 'before and after' photos prove, unequivocally, that a picture really is worth a thousand words.
The improvement is startling, you look fantastic and are a real-life inspiration to many AN patients struggling with facial issues.  Your determination is also awesome and a key factor in reaching success.  Well done.

Jim
« Last Edit: October 04, 2010, 03:23:14 pm by Jim Scott »
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.

JerseyGirl2

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Re: Off to Wisonsin to See Jackie Diels
« Reply #57 on: September 30, 2010, 03:36:01 pm »
Debbi,

Congratulations on your amazing progress -- you look great!

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

lori67

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Re: Off to Wisonsin to See Jackie Diels
« Reply #58 on: September 30, 2010, 03:59:39 pm »
Debbi -

You look amazing!!!!  Glad you had a good trip and so glad you've had such great results!!!

Now I'm going to continue chuckling at Jim being a "bit" verbose....   ;)

Lori


Lori ~ I fixed it.  Jim
« Last Edit: October 04, 2010, 03:24:34 pm by Jim Scott »
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: Off to Wisonsin to See Jackie Diels
« Reply #59 on: September 30, 2010, 07:56:52 pm »
Looking fantastic, Debbi  ;D

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