Facial therapy appt.

[Kaybee]

Hi, I am a little over 6 months post surgery now and honestly find that hard to believe!  I remember in the first few days thinking I could not wait to get to 6 months and poof it's here!  Well, okay, getting here was a little harder than wishing for it.  But things have improved dramatically and I began to see some facial movement about 4 weeks ago.  It was around my mouth when I puckered.  In the next week, my nasolabial fold reappeared.  And last week, I got the tiniest smile.  I have to think about a lot before I do it, but I can make a small closed mouth smile.  If I spontaneously smile, I still have the pirate look.  I also have some cheek movement. I know it's really early from what I'm reading on here and my neurotologist does question the value of therapy, but I have a consultation on Tuesday with a facial therapist.  I am more interested in exercises that I can do and am not interested in electrical stimulation but to those members who have undergone some facial therapy, I'm curious what kinds of questions you had for the therapist.  To be honest, I don't know much about her qualifications/experience and really want to evaluate her during my appt.  I want to be prepared for this appt.  Any advice? 

Thanks so much!

[Debbi]

Hi Kaybee-

Wow - it's already been six months!

First of all - GREAT that you are seeing movement in your cheek and mouth.  That is wonderful.  It sounds like you are healing at about the same pace as I did.  And, by the way, I still have a bit of pirate smile if I am laughing or smiling really big.  I think of it as a charming quirk now.   

I saw on another post that you were thinking of coming to hear/see jackie Diels at NYU/Bellvue on the 9th.  I think that will probably give you a really good idea of what to look for in a therapist.  The challenge for all of us is that there are very few trained neuromuscular facial therapist/retrainers.  I went to 2 other places in the greater NYC metro area before I finally made the decision earlier this year to go to Wisconsin and see Jackie.  And, all I can say is that I wish I had gone sooner, but I am very glad that I went eventually!  There is a vast difference in her approach as compared to the facial "therapists" I saw here. 

As for questions for the therapist you are seeing - things I think I'd ask is how many other Acoustic or Facial neuroma patients have they worked with and what was the result.  Do they regularly work with bells palsy patients?  I would personally be just a bit cautious if more of their work is with stroke patients, only because the issues there are different than those we face (pun intended  )

There is a lot of mixed reviews on nerve stimulation (electric) but the people on my medical team, including my neurotologist steered me away from it.  And, when I saw Jackie this year, she said the same thing.  My nerve is healing on its own, albeit slowly and they've all said stim. could do more harm than good - but keep in mind, that is what they said about ME. 

Okay, I'll stop now.  If you are going to go to the event on the 9th, maybe we can meet up there?  Its always so much fun to meet other ANers!  And, please, if you have any questions, feel free to PM me anytime.

Debbi

[Kaybee]

Debbi, I would love love love to meet up at the seminar.  Yes, I am leery about e-stim.  I am very interested in Jacki's seminar as my top goal is to know what to avoid doing as my nerve is healing.  I'm trying hard not to stretch too much but it's hard not to practice my new smile!  About my timeline being comparable to yours, yes, don't think I haven't viewed your blog numerous times checking out your timeline.  I know every ANer is different, but...

Thanks for the tips about the facial therapy.  And I look forward to meeting you!

[Cheryl R]

Jackie has always mentioned not doing any electrical stimulation at her presentations at the AN symposiums.    Also not to chew gum as it can worsen synkinesis.    My surgeon even mentiondd to try that so we can hear varying opinions.     She is also big on not needing treatment for almost a year or at least till one is getting some movement.     Facial muscles are different than regular muscles in our body and can handle the paralysis longer.     They aren't going to work well till the nerve heals enough to make the muscles work and that can be a slow process.   
      Anyone who has met Jackie has high regard for her help she is able to give and she is such a nice lady!
                                                                    Cheryl R

[been there done that]

 Go to therapy as long as the insurance will pay for it, results may vary . If you get results good if not don't waste your money, it is a very slow process it can cost a fortune. But i would pay a million dollars to be able to smile again.

[epodjn]

I'm a big believer in therapy. it won't increase how much movement you get back but it can make a WORLD of difference in the quality of movement. I've been in therapy for almost a year. The progress has been SLOW and a lot of work, but my face is looking so much better. I am gaining control of the synkenisis and learning little tricks that I would not have figured out on my own to relax muscles and make them work more efficiently. The right therapist is important. If you can find someone trained by Jackie that would be great. Mine was and I love her!

[Kaybee]

I was very pleased with my appt.  My therapist at the Balance Institute of Indiana has trained with Jackie Diels.  If anyone is in the Indianapolis are and would like contact information, please feel free to PM me.  She assessed me and foolishly I did not ask what scale was used.  I know my score stunk at 24/100.  However, she was able to discern some movement below my eye.  My lower lid wants to move up when I close my upper lid but just does not have the strength.  I will see her again in about 6 weeks and for now am doing an exercise (which I have seen on this forum) to close my eye more fully. 

I close my right eye (my good one) and hold my thumb as far right as possible without so that my left eye (my affected side) can still see it  (if my pupil is in the far lower corner).  My head is looking straight ahead.  The idea is get that pupil in the far corner.  Then I slowly close my left eyelid and if I can still see the thumb, then I know my eyelid is not closed.  This helps to overcome Bell's phenomenon.  I know a comparable exercise is on the Bells Palsy website. 

The other activity is a series of massages.  I had no idea how tight and knotted those little facial muscles were.  I have just started to get movement back about 3-4 weeks ago.  I went from total paralysis for 6 months to now having a decent smirk, a tiny closed mouth smile, an adequate pucker, and some cheek movement.   I have seen where some posters recommend light massage when you first have facial paralysis but this is not light massage.  But I'm NOT advocating any heavy massage when there is no movement.  I am only massaging the areas that have shown some signs of life, and this is under the care of a therapist.  I did NOTHING until I saw movement except for some heat and gentle massaging only if I had some pain in a certain area.

 And epodjn, yes, I get your point!  I do not think this is speeding up my recovery or giving me new movement.  But I do think I have seen better movement even in the last couple of days. 

Because my therapist has trained with Jackie, I am excited to learn that she might refer me up there if I show more improvement in the next 6 months as Jackie's office has many more diagnostic tools.  The Balance Institute does not get that many facial paralysis patients so I did not have an EMG or anything of that nature during my appt.  Again, PM me if you want more information!

[Debbi]

Hey Kaybee-

This is SO exciting!!  I am thrilled to hear that it went so well.  How much time a day are you spending on your massage and exercises?  And, isn't it amazing how knotted those muscles get?  Jackie told me that it was as if I had 25 or 30 little charley-horse cramps all over that side of my face!  I am glad that you can already tell a difference in how it feels.

And, yes, you are right that this doesn't make the nerve heal any faster, BUT it does teach us how to make sure the brain is sending the right message to the nerve and subsequently to the muscle.  I think you are being very smart and very proactive to work with someone who is well qualified for this specialized type of therapy.  I am sure that this will make a big difference in whether you develop synkinesis or not.  I could probably have avoided the synkinesis if I'd worked with the right therapist earlier in the process. 

So ... YAY for you!!!

Debbi

[Kaybee]

Thanks Debbi!  I am doing the massages about three times a day and the eye exercise about 5.  I have my husband look periodically to see if that eye really is closing.  Sometimes, yes.  Sometimes, no.  But if I have learned anything in the past 6 months, it's that there is no reward without effort!  My face feels much much better.  And even after 3 days of massage, I can tell I have fewer of those knots (or tender points).  So far she does not see any signs of synkenisis but obviously I'm very early into recovery so I'm sure there is plenty of time to develop that!  ; )

After she worked out some kinks in the office, I was able to get a bigger smile.  Which was great! 

[Kaybee]

oh and to add to my post:  my therapist told me there is nothing wrong with doing some controlled attempts at movement.  Slow and steady wins the race...as the tortoise told me long ago!

but importantly, if you are going to attempt to stretch some of these weaker muscles such as do open mouth smile, snarl, raise eyebrows, etc., always start from a place of rest. let your face relax to a neutral position and then attempt a movement slowly. 

[Debbi]

I just thought of something that might be helpful.  Since it's not always possible to have my husband around when I do my "eye closure" exercises, I use the webcam on my computer and just record a short bit.  This way I can see for myself if my eye is closing all the way or not.  I have recorded a few clips of me talking just so that I can see the changes in how my mouth moves.  Some of the changes and improvements are SOOOO subtle that we don't always even recognize them.  So, having a video history helps.

Hope you're having a great holiday weekend.

Debbi

[Kaybee]

What a great idea!  I tried my webcam this morning.  This is much better feedback than any mirror.  Thank you!