Facial therapy for paralysis

[jilljpower]

So, I am post op 15 months now and have just a little bit of movement in my lips and chin on my affected side.  I really wanted to do a facial sling or the T3 so that I may have a "happy" look on my face until I spoke with Jackie Diels who is a facial neromuscular therapist with 25yrs experience.  She had a lot of information and said if your nerve is intact and you have any recovery, you should definitely try therapy first before making such a huge decision.  I do agree, I just was looking for a quick way to be done with this.

I have an appt. with her this fall, but was denied a referral from kaiser because they said the therapy isn't "scientifically proven."  Any suggestions about how to convince kaiser to pay?  Has anyone else seen Jackie and had insurance pay?  Also, did the therapy really help?  I'd love to hear.  My appt coming up this November is a 3 day session, but I really hate having to pay $6,000 out of pocket.

Jill

Oh, and she has her info on the bells palsy website if anyone is interested.

[Cheryl R]

Jill.   I am not surprised that ins will say no way and then one has to appeal and make sure they understand the need and reason for this and that it is not just cosmetic.     I did make a short visit to her many years ago with my first AN and was covered.     I would try emailing or calling Jackie's office and ask if she knows the best way to talk to ins.     I am sure you are far from the first having this happen.      Debbi is one of the recent ones seeing her and she might be able to also give you some good advice.       You are at a good time post op for some help from Jackie and I hope it can be worked out in time.
                                                    Cheryl R

[epodjn]

I totally understand wanting to a quick fix to paralysis. Unfortunately there is NO quick fix. But I would definitely wait until I made decisions on surgery. You are still (believe it or not) on the early side of regeneration. I would not have believed that a year ago but now that I'm here I know it's the truth. Nerve regenerations is the slowest thing ever. That can be a good thing however. I have been in neuro-muscular retraining for over a year now. My therapist trained with Jackie. It's slow and a lot of work but totally worth it. It will not cause you to have more movement than you would have had without it but it will teach you how to use the movement you do get back to full advantage and how to deal with synkenesis, that almost everyone deals with to some extent. It's not a miracle but it made a huge improvement in my face, my life, and my pain level. I would recommend it to anyone dealing with facial paralysis.
Not sure how I lucked out on insurance. They never even questioned it. I pay the same co-pay as if I was going to any other physical therapy. I would definitely fight the insurance on this.
Julie

[elderbirds]

Definately ask her or her office how to work the referral.  I went to someone who trained under her and was told exactly what to write on the order.  I took that to my PMD and it was accepted no questions asked.  It is treatment related to an Acoustic Neuroma resection and there are published studies that it helps. (I was given articles and studies written on facial retraining by my therapist). If all else fails write to the insurance comissioner.  That usually gets their attention
hope

[Debbi]

Hi Jill-
Sorry I didn't reply earlier - I actually just got back from seeing Jackie in Wisconsin.  This was my second visit; the first was this past February.  I can personally attest to how successful facial retraining is!  My first visit to Jackie was almost 2 years post op and I had quite a bit of synkenisis as well as poor movement of that side of my mouth.  The improvement that I have gotten by following Jackie's regimen has been terrific - way better than I ever expected!  The only thing I would say is that you must be willing to put the time in at home.  For the first few months after I got back from seeing Jackie the first time, I was doing about 2 hours a day of stretching and movement patterns.  This was partly due to the fact that I had muscle spasms all over the right side of my face and it took that long to get most of them worked out.  I had forgotten what it felt like to have a face free of pain!   

I was fortunate that my insurance (Aetna) paid for it without any problems.  UW Hospital billed it as occupational therapy.  I am sure that Jackie can give you the phone number of the appropriate department there to help you get this approved.  You may need a letter from your primary care doctor stating that it is a medical necessity?

Please feel free to PM me if you want to chat.

Debbi