Facial Occupational Therapist

[ddaybrat]

I went to my neurologist today.  He suggested occupational therapy for my face assuming iit was available at our rehab hospital here in Lincoln, NE.  Guess what?  They've never heard of a facial occupational therapist.  This is one of the best rehabilitation hospitals in the nation! 

Does anyone know of a therapist nearby that has trained with Jackie?  I'm within driving distance of Omaha, Des Moines, Kansas City, etc.  Any farther and I may as well fly to Madison to see Jackie. 

To update everyone on my progress:  On March 31, it will be 1 year since my surgery.  I still have constant headaches kept to a bearable level with Topamax.  I have intermittent severe, crippling, headaches that do not respond to any medication at this point.  My depression is under control using a combination of anti-depressants.  My anxiety attacks are not.  I simply avoid situations that trigger them.  I have no hearing in my left ear.  My facial nerve is coming back.  I have some movement, some tingling, lots of muscle contracture, etc.  My thought processes and memory are still 'warped'.  I can't balance my checkbook and struggle with spelling at times.  For a perfectionist and detail oriented person, it drives me insane!

I'm on long-term disability through my employer through next March.  I qualified for Social Security Disability less than 4 months after applying...probably due to having a severe panic attack in the office of the psychologist required to examine me by Social Security.  That's one of the main triggers of my panic attacks...new situations, stress, strangers, the unknown.  It makes it very difficult to participate in life.

The Lord has truly blessed me.  Looking back over the last year and everything that has happened since I was diagnosed, one might question that statement.  But He's provided me with good health care and the means to support myself while recovering from this nightmare.  I know that many of you have not been so fortunate.  My thoughts and prayers go out to you.

I thank everyone here for their support.  Even though I haven't written much, I have been online reading what you have written to others.  It always helps...especially when one feels all alone out here.

Pat

[Cheryl R]

Pat, Jackie is 5 hrs away from Des Moines as I am near DM.     She is right close to where you come in Madison from the south on 151.    I don't know of any in Des Moines but you could try emailing her and see if she knows any closer to you.            Our daughter went to grad school there so got to know some areas of it,    Plus one visit to Jackie.   I will pm you her email address.
I hope it all gets better for you in time!                     Cheryl R

[Jim Scott]

Hi, Pat ~

Thanks for updating us on your situation. one year from your AN surgery.  You've admittedly had to struggle with post-op complications but you seem to be handling everything as well as anyone could.  That your facial nerve is returning to functionality is a positive sign and much welcomed, I'm sure.  The headaches must be terrible but at least you have some relief through the use of Topamax.  Having long-term disability insurance through your employer is a real blessing and I'm sure your rapid approval for Social Security disability benefits was also a great relief.  The anxiety attacks and depression are complicated issues but again, you're dealing with these as best as you can and as you know, nothing lasts forever, including AN post-op issues.

We're in your corner and whether you post or not, we're glad to have you as part of our AN 'family'. 

Jim   

[CHD63]

Hi Pat .....

I wondered what had happened to you.  So sorry you are having ongoing issues since your AN surgery.  Not an easy time!

Hopefully you will find a facial therapist closer to you ...... but if not, please pursue going to Jackie.  She has done wonders for her patients.  Do not accept that there is no hope for improvement.

Sometimes we just have to nudge the doors a tiny bit before they open and the way to a better life becomes clear.

Many thoughts and prayers for relief soon.

Clarice

[4cm in Pacific Northwest]

Pat,

The title is “neuromuscular facial retraining therapist”

Also sometimes “neuromuscular facial re-education therapist”

Here is a list of centers
http://www.bellspalsy.ws/centers.htm

Many post retrosygmoid headache patients are having success with Botox. It is now FDA approved and if written up properly is covered my insurance now.

Here are some links
http://www.foxnews.com/health/2010/10/18/fda-approves-botox-migraine-headaches/


http://www.webmd.com/migraines-headaches/news/20101018/fda-approves-botox-to-treat-chronic-migraines

http://www.intelihealth.com/IH/ihtIH/E/24479/36146/1360204.html?d=dmtContent

Know that healing happens… albeit some days as fast as a banana slug crossing a tennis court on a Pacific Northwest Rainy Day… it still happens

Keep moving forward and KNOW it does get better with time.

DHM

[Suu]

What does an occupational therapist do and at what stage of 'healing' would you go to one?

Best wishes on a speedy recovery and thankyou for being here.  We seem to all be in a big learning curve in our lives and this is the best place for knowledge about each other and ourselves that I could ever have hoped to find.

Forever grateful,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu xxoo

[4cm in Pacific Northwest]

What does an occupational therapist do and at what stage of 'healing' would you go to one?

This webpage will hopefully answer that question for you.
http://www.bellspalsy.ws/retrain3.htm

Here is part 3 of what Jackie Diels has written
http://www.bellspalsy.ws/retrain3.htm

I suggest reading all links at the bottom of her article on this Bells Palsy Website, in entirety, as Jackie has written this up far better than I could.

Part 1 starts here
http://www.bellspalsy.ws/retrain3.htm

If you have any signs of synkenisis this is another good article written about Jackie's work. I shared this with my physicians and this got the ball rolling here for me and other ANA patients in my locale.
http://www.ophth.wisc.edu/publications/fs_summer_04.pdf

Flying to see Jackie, at the University of Wisconsin, on a regular basis was not realistic for me (nor affordable with my eldest kid thinking she wants to study biomechanical engineering in University and I wonder how on earth we can afford that tuition). Jackie connected me with someone she trained and graduated from her program, who is based in San Diego, named Wanda Crook. It is long story but with my access to the ANA network, I connected Wanda with my OHSU follow up treatment physician, Dr. NG http://www.ohsu.edu/xd/health/services/providers/ngj.cfm.  We are having Wanda fly to Portland on a quarterly basis now... where a few years back we had NO one out here in our locale. (After I introduced Wanda to Dr. Ng- I had them present to our Oregon ANA support group.) Wanda is actually now treating a few people from my ANA support group here in Oregon - who before had no access to care and were not able to fly to Wisconsin to see Jackie- due to the costs etc. I suggest you call Jackie directly and see whom in your area/locale she can recommend.

Remember each patient is unique and all our recovery stages and timelines are totally different. This past week my palsy side eye finally produced tears when the wind was hitting my eye while I was power walking in the Arizona desert. I was amazed when I was in arid Arizona I never needed to use eye drops once. (3 years ago I had a stick on eye weight and hoard for eye goop) So that makes it now past 3 years now since my surgery and the full facial palsy I once had… and I am still having small recoveries presenting today. Now I need to see a sappy movie to see if that eye will cry and produce emotional tears.


Know some patients had full facial palsy recovery in less that 6 months… we are all so different. Each patient has his or her own set of variables: tumor size, location, % of residual tumor left behind on facial nerve to preserve it -or complete tumor dissection etc.

There IS a huge learning curve here.

I was pretty clueless on physiology a few years back.  Now I have read a library, (almost own a personal library now) on this topic and can name the functions of the cranial nerves, particularly the facial nerve and its functions and branches etc, maybe even better than some medical students can on their med- school tests.  It is because this has happened to us we are highly motivated to understand the problem and to find out what can be done to solve it.

You will soon come to realize you are your best advocate and you will need to be the one to seek out information and resources. Many times the ANA has provided me with this information and resources and sometimes I have sought it out and shared it with them so they can share that research I have done- with other patients too.

The successes in my own recovery have been from:
•   My motivation to get better and try what I can to do so.
•   I had one good physician with excellent listening ears (AKA Dr. NG my ocular plastics guy) 
•   I had a physical therapist willing to reach out to a group of patients out of her locale (aka Wanda Crooke) 
•   Which I think the key element and catalyst… the ANA connecting us all together.

Keep reading, researching, and asking questions. This is what will get you the best help. Remember the powerhouse driver down the “road to recovery” has to be you- yourself. The drive has to come from within YOU.

Keep moving forward… the journey is a most interesting one.

DHM

[Suu]

I had a good read of that site.  I wish I could take advantage of most of it but the part where it says to take either a video or pictures along the way to see if there have been changes in movement is a good idea that I'll follow after the 12/7 surgery.
Thanks for posting it.
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu

[ddaybrat]

Hi, Everyone...

I'll bet you did wonder what happened to me.  I sort of dropped of the map for a while...more like the bottomless pit of depression back in January.  It was during this period that I was examined for Social Security Disability.  Took me a good month to climb back out of that pit. 

I just got off the phone with Jackie.  She called me after receiving an email from me regarding finding a therapist close by.  Thanks to Cheryl R for Jackie's email address.  I have an appointment with Jackie in June, the week before the symposium.  I'll spend 2 1/2 days in Madison and then return about 6 months later for a follow-up.  I can't wait to meet her.  We had a wonderful chat.

The speech therapist from the local rehab hospital called me back earlier today.  She proposed doing 4 weeks, 5 days a week, of neuromuscular electrical stimulation on my face.  The minute she mentioned electrical stimulation, I knew she didn't know anything about the appropriate therapy for synkinesis.  She was more interested in solving problems with swallowing and drooling...getting my mouth to close properly.  I knew Jackie wouldn't agree at all.  Thanks to all of you...keep beating that drum about no stimulation of the facial nerve.  I've listened since I first had surgery.

For anyone else who is interested.  Jackie said that there are only 6 therapists in the country and that she is the closest to where I am located.  I'll update you after my trip to see Jackie.

Thanks, Pat

[Karen]

I can't say enough good things about Jackie.  Not only did she help me with my FACE, SHE HELPED ME EMOTIONALLY.  She understands what we are going throough better than any doctors.  I trained with her once a year for almost     5 years..                                                                                                                        iI would see her for a day and a half since I am from Illinois.  If you havr any questions just let me know.  Good luck.  Karen

[Pembo]

I had electrical stim on my face immediately after surgery. It didn't do anything. I went to see Todd at UPH about a year after surgery and he helped alot.

[4cm in Pacific Northwest]

The speech therapist from the local rehab hospital called me back earlier today.  She proposed doing 4 weeks, 5 days a week, of neuromuscular electrical stimulation on my face.  The minute she mentioned electrical stimulation, I knew she didn't know anything about the appropriate therapy for synkinesis.  She was more interested in solving problems with swallowing and drooling...getting my mouth to close properly. 

YIKES!!!

Sure glad you are set up to see Jackie instead. Great news.

Re January Blahs

Before you think this is tumor related you may want to look at this.

http://en.wikipedia.org/wiki/Seasonal_affective_disorder

We have had record rains here in the Pacific Northwest... even the "perpetually perky people"    are gloomy in these parts. This winter blahs is no longer a "theory"...

Spring will be a nice time for you to travel (if it ever gets here!?) ... and you will find Jackie very understanding of the hurdles we face with facial palsy and sykenisis. The symposium to is a positive experience.

Here is looking to sunnier skies and more positive experiences in your future.

Cheers,

DHM