Did I start late?

[Arasha]

It is past midnight and I can't sleep; I got up from bed to write these lines.  I have to share what keeps my mind busy. I have been wondering all these last months about the reasons for my face doesn’t come back as it was before my AN surgery. 
I had my surgery 3 years and 3 months ago and my face is ‘almost’ recovered, that “almost” part makes me feel depressed, with low self esteem and ugly.  I know this wonderful site is to encourage people, in the same way that people do when we meet them in person; I'm sorry if I don't meet that expectation. I have to be honest, nobody will tell me whether I look weird, ugly or not, they are just polite people, as many of us. I remember that ten days after my surgery a friend of mine who came to visit me, told me: “you look awesome” (I could not even have a half smile), few months later, still with my half face dropped, the same friend told me “ You look gorgeous”, and since then every time I meet with her, she gives me compliments. I thank to her for making me feel good for a moment, but I have to be realistic myself, the truth is different, is ugly, hard, and depressive, it hurts…
I have a 70 years old friend who had a brain surgery and consequently complete facial paralysis; as soon as he was released from the hospital he went to have facial therapy (despite the doctor recommended him not do it), one year later I saw him and his face is fully recovered. I have regrets now about not going right away to have facial therapy. I could be wrong, but the time that I decided to have massages, it was not probably quite right.
I know that facial paralysis is unfortunately a common side effect of the AN surgery, but I keep wondering that probably the trick to recover our faces could be related with the time that passes until we decide to do “something”. I personally don’t want other people have this ugly experience; if I can do anything to help them I would do it. Said this, I think that it would be interesting and helpful for everyone to know from people who have had and/or currently have facial issues, about how soon after the surgery we started to “do something” for our facial recovery. I personally started to have facial therapy four months after the surgery (although the doctor told me to just wait 9 months and my face will recover automatically. Long 9 months…).I have had 12 sessions  of facial therapy and 8 acupuncture sessions. It seemed that I was improving very well but two years after, my face stopped recovering, and now I am experiencing synkinesis. Two months and a half ago I decided to have acupuncture treatments twice a week; so far I have had 20 sessions. Let’s see if that works. The acupuncture doctor said that if I have had that treatment right away after the operation I would have had complete recovery. Who knows.
I keep thinking that it should be something that we can do to avoid permanent damage to our facial nerve.  Again, I don’t want to discourage people here, I just wanted to share my true thoughts.
Gloria.

[CHD63]

Gloria .....

I am so glad you got up in the middle of the night to write your feelings!  You know intellectually that none of us has a magic wand, but you also know that many on this forum can fully relate to how you are feeling.

Not quite sure how to say this ...... many of my closest friends have faces and/or bodies that would not make it into a fashion magazine, but they are the most beautiful people in the world to me.  Your friend who said you look gorgeous was expressing her opinion of the inner you.

From a personal standpoint, I turned gray and then white at a very young age (noticeably gray at age 16!).  I hated it so I colored my hair for many years.  One day I woke up and said to myself,"Why am I coloring my hair for other people's benefit?  I only see it when I look in the mirror."  From that point on I stopped coloring my hair.  It took some adjusting to some new reactions from people but now I have embraced the "new me" and rarely think about it anymore.

I am not trying to minimize your frustration with your facial paralysis ..... it is a very different issue from my hair ...... only trying to draw a parallel between our own perception of how we look and what others see.  You are beautiful ...... just in a new way!  ..... and as I know you have read on this forum, there are many stories of improved facial function for months and years after AN removal so please do not give up on seeing any more improvement.  You are doing all of the right things.

Others with facial difficulties will chime in here, I know.  In the meantime, many thoughts and prayers for continued improvement!

Clarice

[Cheryl R]

Gloria, everyones damage to the facial nerve varies.     Sometimes it is so bad that there is little improvment.  There are times that it does show up long after one thinks it never will.           Doing work on it too early when the nerve has not healed is not always good or will do anything.              I had my facial nerve severed with my surgery for a facial neuroma and a graft done at the same time.   I look ok at rest but my face is not completely recovered and with my case will not.        I have my up and down feelings about it but mostly get by with it being how it is.           We all vary in that and how our personalities are.          I am not sure if you even would qualify for some surgical help since have had some improvement.    A surgeon would be the one to decide that.              Most people do not pay a great deal of attention to how our face is unless they sense you are very distraught over it.         Jackie Diels prefers to wait till around a year to see a person after surgery.                Actually going to someone like her could be of help to you.          Are you having depression issues also which many ANers do and talking to a counselor might be of some help also.       The facial nerve damage is not always something that can be prevented.                   It is not fun to live with and we all vary how it feels to us.           I hope in time you can maybe get some help from someone or feel better about yourself as we have all been thru enough with this whole AN experience.     One always can say how they really feel here as we do understand!                                 Cheryl R

[saralynn143]

The grim reality about facial paralysis is that it is completely different for each individual. My surgeon told me that he did not think I would get any movement back at all and should start looking into nerve graft surgery at 3 months. However at three months I got a tiny movement ("snarl"} at the corner of my nose. Now, two and a half years later, I have symmetry at rest, a tiny smile, and most anyone who sees me would not think twice about how I look. On the other hand, I am my own worst critic. I hate how my mouth looks when I speak, but think about it - when you are in a conversation with someone, they are looking at your eyes, not your mouth.

In my opinion, your friend was fortunate to have less severe trauma to his facial nerve. I think it was irresponsible for your accupuncturist to make that statement. Has he treated many people with your condition? "Who knows?" is entirely right.

I don't think I'll ever get completely over mourning for the face I used to have, even if the new one is mostly recovered and perfectly acceptable. We all do the best we can with the information we have at the time. What you did sounds perfectly reasonable to me.

Keep posting. We do understand and sometimes just getting those thoughts expressed helps a bunch.

Sara

[Brewers7]

I am 2 years post op and just went for my first facial therapy session before Christmas.  I am going to a therapist in Nashville who trained with Jackie Diels.  I asked her the same question and she basically said that she has worked with patients much further out and seen improvement, particularly in the management of synkenesis.  Susan

[Truffles]

Arasha,
never apologize for feeling the way you do.  I've been dealing with a lot of the same issues.  It's not just that our faces are different, but they no longer look like we've seen ourselves for the last few decades.  My eyes have never been equal or balanced, but because I grew up that it was something I couldn't change.  Then here comes this tumor and voila! I have a whole different face.  I've had some interesting reactions from kids.  One girl asked if I could teach her to smile like I do since it was so cool.  I almost cried.  She definitely saw something I haven't.  I notice a lot of "normal" people don't have a "balanced" face.  Jackie Diels pointed this out to me and was she ever right.  It's also OK to admit that you might be depressed.  A lot of us are.  I don't think there's been a good study on the psychological impact of facial paralysis.  Luckily I have a lot of support, and there's a lot of support here for you too.  It's never too late to work on things.  Jackie waits a year for the nerves to heal before she starts anything, but she helped a friend of mine 17 years after his surgery!  It's definitely worth a try.  Good luck.

[jilljpower]

I know how you feel.   I struggle on a day-to-day basis with my self image after becoming paralyzed on one side after my 6/2009 AN surgery at age 30.  People who have never met me or seen me before either take a double take, or look away.  It is really hard to take, when people used to look at me and smile, now don't.  I can't even give a normal smile back, which kills me.   

I try to remember that I am still pretty, just a bit crooked.  It can be easy for me to dwell in my saddness and wonder why, and I do quite a bit, but I try to turn my thoughts around... such as "I look better than I did last year," or "the hardest part is over with."  My brother in-law passed away of a milignant brain tumor in 2009 at 36yrs, so those of us with this benign tumor are lucky even though it may feel like it.  We have our life, even though it is much more difficult than it used to be.  Maybe we can make the world a little more compasionate by sharing our stories to one stranger at a time.

I really hope this helps you...  I mean there is nothing that we can do, but therapy for our faces, and make the best of this life.  People say to me "I could not have made it through what you are going through," and it boggles my mind because, I didn't have a choice either, yet I am forced to make it through. 

I am super excited to say that I am visiting Jackie Diels next month.  I look forward to all of the tricks, stretches, and exercises she teaches me.  Apparently, she helps you in many ways...  It can only help.

Thanks for venting.  It makes me not feel alone with facial paralysis.
Jill

[arkansasfarmgirl]

You are your own worst critic.  Nobody else is going to hone in on the "not quite normal" qualities of your face like you do.  The things that jump out at you when you look in a mirror will go mostly if not completely un-noticed by 99.9% of other people.

I had my nerve severed and grafted at the same time.  I have been told that my recovery has been "remarkable".  I do think I have come a long way, but when checking my hair and makeup in the morning, I have to cover my weak side or that is what I see and is the image I take with me all day long.  Some days I am more accepting of my new face than others...

I discovered something in the last few days, though:  I have aquired the ability to laugh at myself when my face gets caught looking goofy by a camera.  My mom took a pic of me throwing a snowball and my face was totally twisted up and weird looking and instead of crying and freaking out like I would have 2 years ago (or probably even 1 year ago!) I laughed hysterically.  Because I knew I was having fun, and also because I know that I do not allow myself to make extreme expressions like that very often.  LOL

BTW, here I am with my little Amazon sister:


Now, if you were not looking for asymmetry, would you notice that my smile is a little crooked?  I am still getting accupuncture treatments (which I started 6 months after my surgery), down to once a month now.  He's still trying to bring up the corner of my mouth, and I have been getting some major twitching in my upper lip and cheek area.  Who knows if it will work?  I'm going to keep trying, but I am Ok if it doesn't ever get better than it is right now.  I may not be in love with my new face, but it's the one that God has given me to bear, and I feel like I should try to bear it with as much good grace as possible.  Not that I always succeed...  ;-)

Vonda

[yardtick]

Vonda,

You are absolutely gorgeous 

Anne Marie

[moe]

Arasha,
Definitely can relate and empathize on the facial paralysis issue. See my sig! I got the "sympathy stares" for the first few years, and had such a difficult time with accepting this "new me."

I am persistent and  decided never to give up hope. My facial nerve was cut & reattached during surgery, but the surgeon said  (years later, when I asked about the "cutting" of the facial nerve)
that all the branches were pretty much dead. No wonder the 12/7 didn't work for me (different doctor). Anyway, keep pluggn along.

Everyone's facial nerve responds differently post op depending on the extent of damage. Maybe your friend's nerve was not totally messed up.

 I tried everything- Vital Stim, acupuncture, massage, 2 surgeries....My most recent 8 hour surgery, where yet a different surgeon transplanted thigh muscle into my cheek, has finally given me movement.
You do have a beautiful profile pic BTW    Keep doing what you're doing, maybe a facial re trainer therapist?

We know what you're going through, most def
Maureen

[Jessica000]

moe, what do you mean by having nerves reattached but the branches are dead? Ain't nerves suppose to regenerate after the repair? The doctor didn't do a proper job?

[moe]

Jessica,
The doctor mentioned years later when I asked him that the "branches" were pretty damaged, if not shot. So even though he did reattach the facial nerve during surgery, it did not progress because maybe it met a "dead end" with the very damaged branches (that's my guess anyway) He  was visibly disappointed after the post period when there was little rejuvenation.

Long convoluted story with the military system, but he immediately recommended a static type lift, probably because he could predict that the nerves weren't going to cooperate. No surgeon at Madigan so I was sent to civilian hospital. Ended up at UW in Seattle. THAT doctor wanted to try the 12/7 nerve transposition (which the original surgeon did not recommend). So we went that route before major facial surgery. It had "marginal" results. (See the pattern? - nerves shot)

THUS the facial reanimation surgery! All turned out, and I got much better response to this surgery than I would have had with a "static" lift.

Sorry for the hijack! Everyone's story is sooo unique, isn't it??
Moe

[Jessica000]

moe,

You mean you already experience facial weakness before operation?
I thought all our branches die before regeneration? I always thought regeneration of nerves means all the nerves that we'll eventually get is new. But that's what I thought. Correct me if I am wrong.

In any case, I agree that anything static should be last resort (together with any other plastic surgery like face lift)

Yup everyone has a story behind them. But we shouldn't be despair no matter what (though I am constantly feeling that myself). I feel that patience is key. Because of my impatience I cause my muscle to be so tensed and now I have to go through the extra step to relax it.

All the best to everyone!

[moe]

You mean you already experience facial weakness before operation?
I thought all our branches die before regeneration? I always thought regeneration of nerves means all the nerves that we'll eventually get is new. But that's what I thought. Correct me if I am wrong.

Jessica,
 Interesting~ I had NO facial symptoms before diagnoses, yet my facial nerve was completely squashed. I remember reading something about the trigeminal nerve (another cranial nerve) controlling some facial symptoms - (like numbness) which may have prompted me to seek help earlier

The anatomy of the facial nerve (and all the cranial nerves) is Unbelievable! I just read this:

The facial nerve contains approximately 10,000 fibers. Of these, 7000 myelinated fibers innervate the muscles of facial expression!!! I am clueless, really, about the regeneration. Just what I've been told by my doctors.

I DO agree that static should be a LAST resort. I'm so pleased with my DYNAMIC  surgery    It all works out in the end..
Never give up,  stay hopeful and patience is KEY. Very hard. I am 4.5 years post op and still a "work in progress". I had noooo idea.....
Maureen