When to take action

[chelsmom]

Hello All,

I'm writing about my daughter that had surgery in June.  This is another go around for her.  She had surgery (removed 70%) followed by FSR radiation therapy in 2006 at age 17.   After a number of complications she recovered well and was left with just a numb spot on her cheek.  In Jan. 09 they found regrowth and on June 1, 2009 she had the translab approach.  Her facial nerve was intact but severely flattened and did not respond to the monitor half way through the 14 hour surgery.  She has right side paralysis and was listed as a grade 4 on the Brackman scale.  We were told by her surgeons not to do anything-no facial therapy until at least 6 months out.  They said the nerves have to heal first and they compared it to doing physical therapy on a broken arm that was still in a cast.  It has been 4 months and there is a little tiny bit of movement, mostly the 6th nerve, which allows her eye to track side to side now.  Of course her eye still doesn't close like the left eye but seems to be doing a little better.  I trust her surgeons but sometimes find myself wanting to take action ASAP.  I know....this could take years.  At this young age it seems like a lifetime though.

Wishing you all the best,
Michelle

[moe]

The docs are right, Michelle.

The nerves do need to heal first. Once she starts getting movement, then it is showing that the nerves are starting to work again, so ask about easy gentle exercises to the face. (4 months now?). So she should be able to start facial exercises, I would think. Though forcing the face to do exercises or manipulating the muscles when they are not ready may results in synkenesis in the future.  (doing a motion such as squeezing the eye shut which causes another muscle to twitch).So keeping it slow and gentle is the way to go. There is a thread somewhere on just that....Will try to find.
I have heard just feather like taps to the face. I'm sure others will pipe in.

I've been investigating acupuncture and have just  started it for my facial paralysis. The people are amazed that doctors don't recommend this as an option immediately after surgery where the facial nerve is damaged. It has never been recommended by any doctor I have spoken to.
 I found out about it on this forum.

It can't hurt. (Okay the needles are a little bothersome going in, but it's OK)..
There is no manipulation. It is all about increasing blood and oxygen to certain areas (in this case the facial nerve) which will help in the healing process.
Just an idea.

 I go to a traditional Chinese medicine acupuncturist and it will take a while, but they are optimistic to get some movement back. (Since I am so far from my surgeries, and I did have my face nerve cut.)

My eye DOES close easier since starting 2 weeks ago. I will be at it for months.

It must be extremely hard for your young daughter to have to endure the facial weakness/paralysis.

It just takes time, and being that the facial nerve wasn't cut, she should know that things will get better.
I have lost patience myself!

Tell her to hang in there.
Maureen

[moe]

Michelle,
You'll also see some threads under facial issues on facial exercises/synkenesis etc. Here is one
http://anausa.org/forum/index.php?topic=10459.0

[Jim Scott]

Hi, Michelle ~

I'm sorry to learn that your daughter, Chelsea, is still struggling with her recovery from the second surgery.  I realize how hard this must be for both of you.  You want to help her but are basically told by her doctors not to do anything, while she has to deal with the facial paralysis, eye issues and so on, 24/7.  Unfortunately, the doctors are correct, as Maureen pointed out.  As a naturally impatient person, I can understand how hard it must be to simply wait for the facial nerves to heal before attempting even mild 'exercise'.  Your patience is necessary in this case but knowing that doesn't make it any easier, I'm sure. 

Please know we're all rooting for Chelsea. and many of us are praying for you both as you take this latest struggle with forbearance, 'one day at a time'.   

Jim

[ilsemor]

Hello Michelle - My heart goes out for you and your daughter.  I had my surgery three months ago and also have a 17 yr old daughter.  I don't ever want my daughter to go through what I have.  I had no damage to my facial nerve during my translab surgery and my face looks more normal now, my eye does not blink yet, but it closes more at night, I still tape it.  I don't know where your daughter had her surgery but the doctors at House recommend you do nothing, I asked if I could do acupuncture, chew gum or massage it and they insisted in doing nothing until a year.  Try to help her to focus on other things, not to look too much at the mirror and pray for Patience.  I know she might have a hard time being thankful at this time but she needs to realize she's still better off than a lot other people.  I will pray for her and for you.
Ilse

[chelsmom]

Hello Everyone,

Thanks for all the information and kind words.  We will all be patient I guess.  It's good to know that you've also been told the same thing, "wait for the nerves to heal before doing anything".  Chelsea has a very good attitude about it so far.  She is back at school and continues with all the social functions that come with college life.  She is a math and education major and she has had to do quite a few presentations lately and she never hesitates to give it all she has even though her facial paralysis can sometimes make it difficult to understand her.  She deals with it most of the time, but does have her moments once in a while.  I will keep checking on everyone here and follow everyone's progress.  It helps me understand that like with most things in life..........time heals!

Thanks Again,
Michelle

[ppearl214]

Michelle

Really don't have anything to add, but you KNOW I'm thinking of Chelsea and you... and sending the infamous "hugglez". She's come sooooooo very far (as have you!) and I'm thinking of you both. Been a VERY tough road and please tell her "hi" for me.

xoxox
Phyl

[Sue]

My hugs and best wishes to you and Chelsea also.  You guys are the best.  I am so hoping Chelsea will have good days ahead of her soon. 

Love
Sue in Vancouver, USA

[MissMolly]

Hi There,

First, I'm sorry about your daughter's frustrations following the surgeries. 

I can only tell you my experience with facial therapy and what the PT told me througout the process. 

I had my surgery in June with little facial paralysis after surgery.  However, 10 days after surgery, the paralysis had gotten worse and I had no movement on the left side of my face.  I'm a speech pathologist and a singer, so I expressed concern to my neurosurgeon about this.  He recommended me to a facial nerve specialist right off the bat.  She did a complete analysis on my facial movement and recommended I see one of her physical therapists to see if the therapy would help.

I did see the PT, as luck had it, on the same day.  She gave me the exercises and massage techniques that were really quite simple. I did them faithfully.  Within a couple of days, the muscles began responding again and I could almost blink and could turn up a little bit of a smile.  By 6 weeks, the paralysis was not noticeable. 

I know that your docs have said to wait, however, my therapist told me that the exercises do much to keep the facial muscles flexible and limber and to keep atrophy at bay, so that when the nerve heals and impulses do begin getting to them, they are more able to respond.  This made a great deal of sense to me. 

With my experience, getting the therapy started soon was a good idea.  If anything, to keep the muscles 'ready' for when the nerves do start sending messages. 

I know this is a different experience than others have told you about, but ... I felt that the facial therapy helped.  You are certainly welcome to send me a message if you want more information.

Miss Molly

[saralynn143]

There is a difference between immediate facial palsy, which is evident in the recovery room, and delayed facial weakness, which begins one to three weeks post-op. The first is due to an injury to the nerve, the second caused by swelling after the fact. Delayed palsy in general resolves faster and more completely. The approach to therapy will be different as well.

The facial nerve specialist I saw (at Washington University in St. Louis) also told me no therapy until after the first year.

Best to Chelsea in her recovery.

Sara

[Cheryl R]

Facial muscles are not the same fibers as regular muscle fibers so there is little problem with the possibiltiy of atrophy.    Jackie Diels has told us that at the symposium each time.    We had great discussion of that this year too about when to start any therapy.    I know it can be confusing when hears one persons view and then different from another.            Jackies view is the 10 mo to 1 yr before therapy.               We all just wish the best luck for any of us with facial issues!
                                                                   Cheryl R

[stoneaxe]

I'm 5 months post-op and my doc had me make an appointment for this Friday with the facial therapist. He sees enough improvement in tone and structure that he thinks its time. I have started developing some synkenisis (tears instead of saliva when I eat). I'm hoping to head off any muscle synkenisis with the therapy.

I had full facial function during and immediately after surgery. Facial paralysis started to show on day 3 in the hospital. It been slow but steady progress since then. I do notice that my speech is worse when I'm tired but I also notice that if I'm focused on proper annunciation it helps. She might try practicing her presentations and focusing in particular on the letters that tend to give problems. maybe even develop a practice presentaion with lots of those letters present.

Free french fries with every frappe!....practicing could potentially produce picture perfect presentations... Can you tell that F's and P's give me the most problems.

My heart goes out to your daughter. I can't imagine having to face this when I was 17. Sounds like you have a pretty strong willed young lady there.

[epodjn]

My heart goes out to you and your daughter. Heck, I'm 50+ and this can be hard to deal with. She must be an exceptional girl. This experience really makes you think about who you are, inside and out. Although it is a difficult road there are many positives to come out of it. She will have learned lessons early in life that some people never get. In the end she is going to be a stronger and better person for going through it. But I know getting from here to there is hard. Give her lots of hugs from all of us.
As for therapy, it's really a very individual thing and best decided by a trained therapist. I am 10 months out and started getting movement back (after nerve being cut and grafted) at 7 months. I have been in therapy for two months now and it sure is helping. This is just my opinion, but before I went I was starting to get some hypertonic muscles and synkenisis and with the therapy I have noticed that my facial movements are more smooth and flowing instead of jerky and tight like they were before. Another big plus is that as the muscles start getting signals from the nerves again they can tend to spasm and that really hurts. The massages they taught me have relieved a lot of pain.  Well, that's my plug for therapy. I'm a big fan!! I really can't imagine anyone not being helped by it in some way.
Give her lots of love and hugs from all of us.