Newbie looking for referral for facial nerve PT in MD/PA/DE/NJ area

[Rani]

Hi- I have been reading your discussion board for so long I feel like I know most of you like family.  This is my first post.

I had retrosigmoid surgery on a very small (11mm x 12mm x 7mm) AN  on July 9th 2010, JHU Dr. Weingart and Dr. Niparko. I was not at all prepared for the recovery.  I guess b/c the tumor was small, I had 10% hearing loss,  the docs were convincing, my "self" was convincing, I expected no complications.  When it comes down to gratefulness, I should be full of it- my kids still have their Mom, the tumor is gone (and benign),  I am here!  I was not prepared for facial paralysis, SSD, and post op headaches.  I have just returned from my (feels like 100th) trip to the neurologist for adjustments on headache relief (which should be a different post!)  but my most pressing issue is new and it is facial synkinesis.  This is a new development- I have had some recovery in my facial movement- about 30%- but now my eye blinks when I chew and is starting to do it when I speak.  From what I understand- this is something I should look into right away.  I asked my neurologist today for a recommedation adn he said he had not heard of such a thing (as a facial nerve PT- am I calling it the wrong thing?)   So I am wondering if anyone can recommend someone in the MD, DE, NJ, PA , WASH DC area.  I might even fly if it's worth it.  (well, not weekly....

Thank you for this place.... thank you for letting me vent...... Rani

[moe]

Hi Rani,
Debbie on the forum went to Jackie Diels somewhere in Wisconsin for her synkenesis.
Here is the post:
 Surely a long trip, but at least on the same side of the country! People rave about her. Just a thought!
Maureen
P.S. Welcome to the forum

http://anausa.org/forum/index.php?topic=11714.msg134972#msg134972
Another one:

http://anausa.org/forum/index.php?topic=13776.0

If you type in Jackie Diels into the Search box, you'll read more about her.

[m4guzman]

Hi Rani

I just got back from seeing Jackie Diels.  She is the best.  I too had a great attitude.  I never thought I would be SSD and have facial
Issues.  But I do not complain because - I am alive!  But it is hard to live with the recovery. No body understands but the people  here.
Feel free to vent.   It is ok to feel that way. 

Anyway, I think you should give her a call.  Maybe she could help you with the synkensis.  I know that she has help me.

Marybeth

[Nickittynic]

I had surgery at JHU, too, and they referred me to their facial PT there and also to Dr Boahene for botox for the synkinesis. I only went to one appointment (not because of them, but because of my insurance and my own emotional hangups on working on my face), but there was a lot of improvement in that one day! I think the botox really helped.
I'll see if I can find the card of the PT lady I saw. I think she trained with Jackie Diehls.

Did you ask Dr Niparko about it? Dr Francis (the ENT half of my team) was the one who referred me to Dr boahene, who then referred to the PT people. So I would try asking Niparko about Boahene first.

[Keri]

Hi Rani,
I went to an AN support group meeting in DC. There was a physical therapist there who works a lot with facial paralysis. I had my tumor removed almost two years ago. My facial paralysis was very bad at first, then got better, then just settled in to what it is now... irritating, but not enough to make me go get help right now. My eye blinks better than it did, my face smiles better than it did, but just part of my face feels dead, and so it feels tired and makes my good half work harder and then feel tired, if that makes sense. WIth other medical expenses taking a top priority in the family (i.e., kids!) I just haven't been able to do anything yet. I did get a card from a PT who was there. I have no first hand experience with this person, but many from the AN support group liked her. Hope the info helps. Do you live in MD? I live in Silver Spring and had my surgery at University of MD in Baltimore.

Here's the info: Jodi S. Barth, PT
NPH Regional Rehab at Montrose
6001 Montrose Rd #402 Rockville, MD 20852
301-984-6594 x 17
or 18109 Prince Phillip Drive #155
Olney, MD  20832
301-570-3138  x 217

If you use Jodi Barth, please let me know how it goes!

Keri

[rosie_p]

I have done pt for my facial paralysis w/ Jen Millar at JHOC off S. Caroline Street in Baltimore City.  She is AMAZING and I have come so far in the year and a half I have been seeing her.  I see her every other week since I live so close and have been able to take advantage of that.  The number is 410.955.0015.  If you have any more questions please let me know

[Truffles]

Hi,
Jackie has trained people all over the U.S. now, and I'm pretty sure some of those were in PA.  She would gladly give you their names if you e=mailed her.

[elderbirds]

Hi Rani,
I too had surgery at JHH with Dr. Weingart.  I went to see Jen Millar a few times as well.   I also have seen Todd Henkelmann in Pittsburg who trained under Jackie Diehls.  He was wonderful, he just changed locations, but I have his contact info.  I plan on seeing him again next month to check on my progress, and "tweek" a few things.
Hope

[Debbi]

Hi Rani,

Sorry to be jumping in so late!  You've gotten some good suggestions so hopefully you've made contact with one or more of the therapists.  If not, the first place I would start is with Jackie - as several folks have said, she has trained many, many people and can certainly make some recommendatoins.  In fact, she just trained someone at NYU late last year - if you want the info, I can get it for you.  I saw Jackie last year and results have been fantastic!

Debbi

[lori67]

I know there is a lady who trained under Jackie in Edison, NJ, but I don't know her name or exactly what facility she works with.  Helpful, huh?   

Jackie would have a list of everyone who has worked with her and where they are located so she would be able to find who was closest to you

When I moved from TN to VA, my PT there was looking for a facial therapist in VA for me and I remember her saying there was one in Edison.

Good luck!
Lori

[jross]

Hi Rani.

     I have started therapy at NYU RUSC 212-263-8830.  Sarah was trained by Jackie this past fall. You will need to send them a prescription from your doctor and a copy of your insurance.  I specifically asked  for the person who went to wisconsin for the training.  Still too early to see significant differences, but I'm optimistic.

      Hope this is helpful.  Jill