facial paralysis treatment?

[LizH]

Does facial paralysis as aresult of AN surgery eventually heal? What are the treatments available now for facial paralysis? Thank you. Effiya

[tony]

I understand your concerns
I guess there are 101 ways to assist with the face issues
- if you check out Nancyann`s progress you may get some idea
I guess the real question now is : how long has it been
since you had movement, 0-6mths is not unusual.
Equally more than 18mths - no sign - may mean
extra support will be required
It does all depend a bit on how long
- and how much change has occurred
My suggestion is - dont rush into anything
get a range of views on "best course"
then make a choice
- you may not want many, or extra OPs ?
I am sure others will chip in here
Best Regards
Tony

[LizH]

I don't have facial paralysis now because I haven't had the surgery yet but the Neurosurgeon has told me that I will get it after surgery because my tumor is big and I have had it treated previously with radiation. He also has been told that I may have MS which I don't believe. I have MS symptoms because the tumor is growing and pressing on my brainstem. It is about 4cm big in diameter.

[Cheryl R]

Facial paralysis will depend on how much trauma the tumor has put on your facial nerve already.   Facial paralysis can resolve on it's own and take time and each person varies.       Sometimes it does take quite a long time.   There are some surgeries which help fix the damage..     If one has the nerve severed than it will not come back.      I had my facial nerve severed as had a facial neuroma surgery in 2006 and I had a nerve taken out of my neck and grafted into the facial nerve with some return of function.    I look ok now to look at me but poor smile.          There is some facial therapy, which can help in time too.           The biggest thing to expect is that the muscles will not work until the facial nerve has healed enough to let the muscles work.   So time and patience is very important.                  Facial muscles are made of different fibers than regular muscles so they will not atrophy from non use as fast as regular muscles.                             A good website   is www.bellspalsy.ws         A good facial therapsit from Madison,Wisconsin has some info on there.
    I have been thru facial paralysis twice.    I had it for 3 1/2 mos past my 2001 surgery and then about a year with the 2006 surgery before showed some improvement and of course I will not return to full function ever.      I have had dry eye both times and which is imporving still.        Eye care is very important when one has an eye that does not work right.                  Also many people do not end up with facial paralysis or eye problems.   
                                                    Cheryl R
   

[calimama]

Hi LizH...

I am sorry to hear that your AN has grown after FSR. I thought this was not that common (say less 15%). Did you know that it was growing these past 7 years, or was it just thought to be swelling?

I am currently considering GammaKnife or FSR (most likely GK) at Toronto Western. Same doctor has you had.

Have you been given any insight into why your AN did not shrink/die? Can i ask where your AN was located? my is similar size to what yours was.

I dont think GK was an option for you back in 2001. I hope this is a more successful treatment...

When is your surgery and who is your neuro?

Thanks for any experience you can share.
Best wishes to you....

[nancyann]

LizH:  So sorry to hear of your recurring tumor.   There are a few options you can take.
I would ask the doctor if it's feasible to do a nerve graft at the time of surgery if the nerve has to be severed.
You can wait & see post op if you get movement back - usual wait time per the docs is 1 year, then decide
if you want to do a nerve graft.
Or you can look into other surgeries that help with appearance but you don't get movement back, such as
temporalis tendon transfer (T3) whcih I had with facelift, browlift (depending on your age you may not need
the accompanying surgeries), or just have facelift, browlift.   There is something called the sling procedure
that helps the droop also.

Please speak with your doctor about these options.

I'm sorry I missed your post in February;    always good thoughts,   Nancy
ps:  thanks calimama for bringing this post to the surface again.

[linny]

I had 3.5 AN  back in 2006 and my face isnt better yet. synthesis, snarl I call it. Drives me nuts I guess I shouldnt be so vain.But its hard to look at myself in the mirrow sometimes, and the looks from other people isnt very nice either.  Good luck to you 

[calimama]

Thanks ladies...

I am stilling weighing treatment options and considering surgery despite some of the horror stories. My AN is med-large (2.2-2.9cm) so i am a bit worried about facial implications (ok, VERY)... i don't think it's vain at all, probably more so for women.
I am also concerned about dizziness, vision problems and headaches as i have no symtoms now other that some hearing loss and tinnutis (which i can live with).
It is nice to hear that some people actually get through surgery without incident. No sure how many there are... but it gives some hope.
I am also considering the fractionated 25 session LINAC that LizH had, although it is very discouraging to know that i have the same size AN and would see the same doctor...
UG. it's all such a gamble...

thanks to all for helping to make a difficult situation a little easier. i don't know what we would do without the internet and the help of those who have gone through this before.

Trish

[smileyface]

Hi All!  I thought I would put myself out here to a shoulder for anyone going through facial paralysis from AN surgery.  I am 43 years old.  I had An surgery 9 years ago.  My AN was 2.2 x 2.5 cm (medium AN).  I chose surgery over radiation, which would of been Gamma Knife,  here in Cleveland.  I was worried that the tumor would still grow and I would end up having surgery anyways.  I thought that I would have a better chance saving my facial nerve this way.

For me, the tumor was wrapped around my facial nerve and even though my doctor felt there was some movement at the end of surgery, my facial nerve never regenerated.  I didn't want to have the 12-7 nerve graft because I had swallowing problems after my AN surgery.  I forgot the name of the surgery now, but my plastic surgeon took a nerve from my ankle and grafted it to a branch of my facial nerve on both sides of my face.  This was done like a facelift would be done.  After 9 months, I started getting some movement from absolutely no movement before.  About a year later I had a facial sling done on the paralized side to help shorten the muscles so they could work better.  It has been about 6 years since these surgeries were done.  It was a success.  Now, it is not they way it was before AN surgery.  It never will be.  But my mouth is more symtrical and I have a crease along side of my nose.  It is funny, because I hate pictures because the bad side stands out but a few months ago I had some dental work done.  The novocane I was given was in the area where the nerve runs under my nose.  I couldn't move my face on bad side at all.  Scared the heck out of me.  I didn't realize how much movement I had until I didn't have it anymore.  I think that I hate the whole dry eye thing more then the crooked smile.  I also have the gold weight in my eyelid.

Now, I always felt  (even though it was hard at time) that I was not going to let this situation define who I was.  I wanted my children to see that mommy was strong and could still hold her head up high even though she looked different now.

I have made a special point to groom myself (stylist hair style, nice makeup, dressed in style) so that people would look at the whole me and not focus on the part that was different.  I even went out and started my own business 6 years ago.  I guess what I am trying to say is even though this s@#ks.  You can hold your head up high as though nothing has changed and people will notice the confidence (even if it starts out fake) and not take much notice in your facial differences.  Soon you will start feeling confident too.

Life gives us  surprises that we cannot control.  I believe sometimes they are happening for a reason.  I have tried to feel that maybe if someone is having a hard time about something that maybe I could help them by showing them that they can get through a difficult situation. 

I hope this helps and doesn't sound to corny.

Anyone who needs to talk, you can email me.

[MCLARKE46319]

Not corny.... but I see someone who is courageous, smart, risk taker, and good mom.  I think that you are all like that including my daughter.  She is in sales in the hotel industry and made cold calls 5 months after her surgery.  She didn't let a droopy mouth and half sewn eyelid stop her.  She isn't a mom, yet, but she is all of the above.  I admire everyone who writes on here and I think you are all heros.  You can't possibly know how much all of you, and this site, have helped me through the 1 1/2 yrs since this has happened to my daughter.  Thank you!!

[Jim Scott]

Hi, Smileyface:

Thanks for your inspiring, encouraging post. 

Your determination not to allow facial paralysis to define you is absolutely correct.  That you've accomplished that goal is commendable and worthy of being known to others that may be in a similar situation as you were.

I'll be thinking of (and praying for) you - and a successful outcome to your surgery - on June 4th. 

I've taken the liberty of adding your surgery date to our community calendar.  http://my.calendars.net/an_treatments/d04/06/2008?authenticate=&display=M&style=B

Jim

[ppearl214]

Hi smiley and welcome. Glad you decided to come join us. Please allow me to apologize for the "edit" in your post of removing your internet email address.  Unfortunately, for the safety of site users, we don't let personal info (yeah, I know,..... this includes internet email addresses as well.... ) to be publically posted as we have had issues in the past.  The site rules can be found here:  http://anausa.org/forum/index.php?topic=4.0.

Now, I have to say, not corny at all! I commend your mental strength and positive attitude. Like you, I try to come through this with head held as high as I can.... and to help give back as many were there for me when I first was diagnosed. I am so looking forward to your further participation here!  I have a feeling you have much to offer folks here that have just started this journey and would like for you to share with them.

Again, welcome!
Phyl

[smileyface]

Thanks for the welcome!  Sorry about the email post.  I didn't remember from years ago when I belonged to this discussion group.

I am here for anyone who needs to talk.  It's nice to know that there are others going through the same thing.

Kim

[Kaybo]

Kim~
Sounds like we have an AWFUL lot in common - especially the fact that we aren't going to let a little thing like a paralyzed face slow us down!!!  I would love to chat with you sometime - I have unlimited long distance if you are in the US!!  PM me if you want to chat!!

K     

[4cm in Pacific Northwest]

Effiya,

...Getting back to your original questions...

  "Does facial paralysis as a result of AN surgery eventually heal? What are the treatments available now for facial paralysis?"

RE: Does facial paralysis as a result of AN surgery eventually heal?
Yes in many patients facial palsy does heal. Many of those people move forward and leave their AN stories behind so we do not always hear from them here. Usually the ones you hear from particularly under this “facial issues� section is because we have facial issues and support each other through this.

There are some people who have a 4cm removed and have no facial issues post surgery and then there are some of us 4cm who do … and then there is a whole variance in between. The bigger the tumor the higher risk of facial issue post surgery. Your surgeon is correct that tumors that have already been radiated (GK or FS) can be harder to remove as the make up the tumor was changed and in some cases these are more adherent to the facial nerve.

I was told that my face should recover in 6 months by my surgeon … and it was right on track … then the synkinesis set in. So he was right but unfortunately I came under that 15% who gets the synkinesis. I have also been told that Bells Palsy can take anywhere from 3 months to 3 years to resolve.

RE: What are the treatments available now for facial paralysis?

Neuromuscular facial retraining therapy
This is for those who still have some facial nerve firing or movement. I met with a neuromuscular facial retraining therapist and she gave me some stretches to do that were beyond what was posted on the Bell Palsy website worksheet.  http://www.bellspalsy.ws/exercise.htm  These were designed to deal with my personal overactive muscle issues and may not work for someone else whose synkinesis is affecting different muscles. This is why meeting with a certified, reputable and trained therapist- is key. Be sure to ask your surgeon what he/she offers patients for physiotherapy – “ifâ€? there are issues - post surgery. (Some surgeons do very little for their patients as far as physiotherapy and follow-up. You need to avoid those that have this negative and non-progressive attitude towards the effectiveness of physiotherapy)


I have been doing the stretches prescribed for me for 4 days and already I have a very significant movement in my nostril- that was not doing anything before meeting the therapist. She showed me how to loosen the muscles and get rid of the snarl that Linny has described above.  I spend 2 hours a day now working on “my bodyâ€?: exercise (power-walk), vestibular (palates ball and neck stretches) and the new facial exercises. I do believe that these are working but it is a slow and laborious process. I have to remain disciplined. We have not gone “the botox route yetâ€? - but this is in the forecast for my overactive neck muscles.

(Linny, please know I have been working very hard to connect this therapist with OHSU and we are currently looking at getting a presentation together for our local support group. The OHSU doctor is very interested in bringing this therapist out, as she is out-of-state, to his clinic to see patients on our area- so know there IS hope here)

This article is worth a read.
http://www.ophth.wisc.edu/about/fsSummer2004.html#botox
The physical therapist I saw last week was actually trained by Jacqueline Diels and before that did vestibular therapy. She is well versed on Acoustic Neuroma Patients. Pretty down to earth and no snake oil business stuff. I liked her.

This talks about the botox option.
http://www.bellspalsy.ws/botox.htm

Temporalis tendon transfer therapy
For those who have had permanent facial nerve damage there is the “temporalis tendon transfer therapy� http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php

Here is a Canadian News Story about this procedure
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070718/facial_surgery_070718/20070718?hub=Health

Plus this one
http://www.news-medical.net/?id=27682

I have a hero on this forum and these are her before and after photos (yes this our    Nancy who we all adore)
http://anausa.org/forum/index.php?topic=5544.msg52378#msg52378


Many who have the permanent full palsy also need an eye weight. This is a day surgery. Most patients do well with the gold weight and now there is discussion about placing it further back than along the eye-lashes. Only a few people react to the gold- this is what makes Nancy so special- she is our “platinum model�. (Ie she was allergic to the gold one... no seriously she IS very special!)

There is also the facial nerve graft
http://www.ncbi.nlm.nih.gov/pubmed/1908974

Maybe someone here knows of more links and links to photos specifically of “before and after�- from this procedure.

Know that it is NOT the majority of the Acoustic Neuroma Surgery patients that get Bell Palsy but is the minority. Try to think optimistically.  Nevertheless I do believe in the philosophy "Prepare for the worst and hope for the best."  You are doing well by posing these questions of us-all.

The one thing that I will impart is that at 4cm you do have a good chance of having dry eye issues post surgery (and this may not be permanent). The one advice I give people is to remember the “E� in ENT does NOT stand for “eye�. If you have any eye ssues, either at the hospital and or after you get home, insist on being referred to an ophthalmologist. The temporary eye weight can be a good solution until the nerves settle down and regains function.
http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights-FAQ.htm

Then after reasonable time and there are still issues you can always have the in-office "day surgery" for a permanent weight. Why have more surgeries unnecessarily?

If you come out of surgery with paralysis- don’t think that it is permanent unless your surgical team tells you so based on their probe reading or that they removed the nerve (higly unlikely but if this happens they do a nerve jump later). Only time and healing will indicate the final facial prognosis.

Effiya, I am sorry you have to go through AN treatment again- but please know there is lots of support here for you- regardless of the outcome with your facial nerve. I am confident you will come to adore, admire and appreciate all the great people here on this forum. I know I sure have.


Tonight I will say a little prayer for you.


Keep moving forward…

HUGS

Daisy Head Mazy