Author Topic: Therapy with Jackie Diels  (Read 3901 times)

ddaybrat

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Therapy with Jackie Diels
« on: June 20, 2011, 05:48:13 pm »
Just returned from Wisconsin after 2 1/2 days therapy with Jackie.  What an amazing woman!  My facial nerves are working...muscles all knotted.  I was pretty sure of both of these before I met with her.  She taught me how to stretch the muscles in my face...hopefully getting them to relax over time...and  a couple of strategies that will help retrain my brain's connection to the facial nerves that will help with the synkenesis.  It was amazing to see the deep crease in my nasal-labial fold relax, if even for just a few minutes. 

I've been so lucky with my doctors, my therapists, my healing...I read what everyone else is going through and it seems my situation has been so minor compared to some of yours.  When Jackie first called me back last Monday morning, her initial reaction was that I couldn't be her patient as she initially saw nothing wrong with my face.  Then, I spoke, I smiled, and she saw. 

Of course, what I see in the mirror and feel when my mouth doesn't work correctly isn't how others perceive me.  Our own view of ourselves is always so much worse than what others see.  We are our own worse critics...our minds tend to remember what our faces looked like immediately after surgery.  We see ourselves changing in the mirror, day after day, but our mind doesn't see the change...it remembers that first look in the mirror after we woke up from the anesthesia.

Jackie doesn't only give us back the movement in our faces, she gives us back the ability to actually see what others see.  Part occupational therapist, part psychologist, Jackie understands what no other professional seems to.  That, in and of itself, is well worth the trip to Madison.   
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid

Debbi

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Re: Therapy with Jackie Diels
« Reply #1 on: June 21, 2011, 08:11:44 am »
I always smile (although a bit crooked) when I read a post like this.  Jackie is definitely a superstar in my eyes.  You really said it so well when you described her as "part occupational therapist, part psychologist".  I remember the first morning when I was sitting in her waiting room, after flying in from NJ the night before.  I was nervous and scared.  In the first 10 minutes in her office, I went from scared to hopeful.  And, it 2 1/2 days, she was able to get me to do things with my face that I never thought I'd be able to do.  Yep, she's a rock star!

I first went to see her in Feb of 2010, with a follow up in Sept.  For the first 3 months or so I spent about 2 hours a day in total working on my face.  It took a long time to work out all the knots and cramps.  Now, I spent maybe 15 minutes a day and most of the stretches and movements I do are completely automatic now.  My cheek still gets knotted when I am tired or stressed, but now I know what to do.  I know that my face is never going to be quite like it was before surgery, but I am happy with the way I look.  Heck, I think my slightly off center smile is quirky and a little cool.  :)  And, I kind of like not having any lines on the right side of my forehead.

So, thanks for sharing your story, ddaybrat!  Keep working on your stretches and you're going to be amazed at the results.  Pretty soon that nasal-labial fold will be all settled down. 

Debbi, proud member of the Jackie Diels fan club!
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

TLC719

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Re: Therapy with Jackie Diels
« Reply #2 on: June 21, 2011, 11:19:12 am »
Hi girls! That's wonderful that you found someone to help with facial issues.Can someone please describe some of the excercises.I've been searching for a way to help me smile again :) Teresa   PS. is there a video anywhere of this?
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

ddaybrat

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Re: Therapy with Jackie Diels
« Reply #3 on: June 21, 2011, 11:34:54 am »
There is no video.  Some of the exercises are listed on the bell's palsy website, but I found them hard to follow when I read them.  Having seen Jackie and had her work with me to get the stretching right, I'm not sure how helpful the instructions are.  Even with her sitting there telling me how to place my hands and how to use them to stretch the muscles, it took several attempts to get it right.  Showing me how to do this was one of the things she did on Monday.  I did them for her on Tuesday and again on Wednesday, each time being corrected by her.

One thing to remember...each of us is different.  Jackie watched me closely, filmed me, and studied where my muscles were knotted before deciding which stretches would help me.  A few of my stretches were decided by trial and error.  I'm not saying that the stretches listed online won't help you, but they are pretty general.  They only address the tightness in the muscles, not the retraining of the nerves.

If you have any questions, send Jackie a note.  I'm sure she would be glad to answer them for you.

Pat
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid

TLC719

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    • Teresa L Childers
Re: Therapy with Jackie Diels
« Reply #4 on: June 21, 2011, 01:03:44 pm »
Thanks Pat!
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

deheisel11

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Re: Therapy with Jackie Diels
« Reply #5 on: June 21, 2011, 04:28:17 pm »
Thanks so much for your report.  During my time on the Forum, I have not heard one thing negative about Jackie.  I am seeing her at the end of July and cannot wait.  It will certainly be nice to tame this synkinesis.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

deheisel11

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Re: Therapy with Jackie Diels
« Reply #6 on: July 30, 2011, 11:54:23 am »
I just got back from my visit with Jackie Diehls.  She is truly fantastic.  I won't go into great detail since ddaybrat said everything I would say.  And as Debbi mentioned about the Jackie Diels fan club, I am now the newest member.  I had made an appointment with Jackie after hearing so many positive things about her on the AN site.  I had also spoken to her in Cincy at the Symposium.  If others have problems with synkinesis, Jackie is your person.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

KathyC

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Re: Therapy with Jackie Diels
« Reply #7 on: September 28, 2011, 04:40:17 pm »
I too, have seen Jackie for her 3 day "boot-camp". I was there starting on June 20, 2011 so, I must have been right behind you back in June! I am 3 yrs out from my surgery and still had terrible facial tightness, dry eye, no movement in the eyebrow and a crooked smile. The smile is the thorn in my side because I'm always laughing and smiling and its really annoying to feel that constant pulling there and around the eye. It feels like my eye is now attached to my mouth. Jackie is wonderful in that she teaches you to be in control of your physical therapy and you finally feel like you're doing something to help this situation. It's been 3 months since I've seen her and there is some improvement but naturally, not happening fast enough. She tells me I am right on track with what I've gotten out of this so far so, I am trying diligently to be patient.
That's the hard part. I don't mind the eyebrow not moving, I just would like to have the corner of my mouth work somewhat normally. I still can't rinse my mouth out without spraying the mirror and smiling always brings the eye down and the corner of my mouth does not want to play. After seeing her though, there is hope for improvement which I did not have before. I would urge everyone if possible to see her for facial retraining if you have facial paralysis.

spgreenfield

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Re: Therapy with Jackie Diels
« Reply #8 on: January 26, 2012, 10:43:09 am »
So I'm only WEEKS passed retrosigmoid surgery (1/10/12)...and beginning to see subtle changes.  My surgeon who bragged NO ONE helped him to remove my AN in surgery watched my face with nearly child-like anticipation during my post surgical followup appt. as though I was going to break into a full smile and be "completely healed" as he contorted his own face into exercises that mine could not even consider attempting!  Since he is not going to be a part of my recovery (long flight for the best) I opted to ignore him and avoid retraining issues that would undoubtedly happen from forcing my face to perform how he seemed to think it should be performing! 

While looking at this string I wanted to see HOW to contact Jackie about timing and how long to wait before I become too involved in facial retraining.  There seems to be all sorts of thoughts out there regarding how hard to work on this stuff - some say wait and don't overdo it, and others are more proactive.  Since I'm not even home where I'll end up I figure I'm not going to push it, but was curious to see what the opinion was of the list as well.....

All in all I flew through surgery - was bounced out of the hospital within 2 days and off on a plane in almost 10 days to recover at my sister's home where I would not be ignored and made to fend for myself.....

Any thoughts, opinions, etc. as well as contact information for Jackie would be appreciated!

Pam
Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

deheisel11

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Re: Therapy with Jackie Diels
« Reply #9 on: January 26, 2012, 06:49:36 pm »
Pam,
Here is the contact information for Jackie Diels:
 
     UW Clinics-Research Park
     621 Science Dr.
     Madison, WI 53711

     (608) 263-7271
     (608) 890-7503   fax
     (800) 323-8942   toll free
     jdiels@uwhealth.org

I would hate to answer any questions for Jackie.  Please contact her and she will address all of your questions.  Once you talk with her, you will understand all of our positive comments about her.  Best wishes on your "journey" of healing.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

Cheryl R

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Re: Therapy with Jackie Diels
« Reply #10 on: January 26, 2012, 08:04:33 pm »
Jackie does not usually want to see pt till have some movement and prefers 10 mos to a year after surgery.     This gives her a good idea of how the nerve is healing.     I know this sounds long but the nerve can take along time to heal and start the muscles to work.     The facial muscle fibers are different than other muscles so should not atrophy.     You can do some light massage so  that the face feels some sensation to it.        Jackie has spoke at all the AN symposiums.      There is a link on the AN home page to get a recording of her session and others from the last and previous symposiums.             She also does not believe in doing any electric stimulation to the face.   
Working with the face takes small slow movements so doing some large contorting movements on your own can cause some nerves to make the wrong muscle work.           Those of us who have had facial issues know the wait is not easy.     Also making sure that your do proper eye care is most important with any dry eye.            Hope this answers some of your questions and Jackie will also talk to people or answers emails.             She is such a nice lady!                      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

 


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