facial nerve recovery time

[stewie]

Hi all,
I'm new to the forum. Had surgery in December 2005 on a 3cm tumor, so I'm about 16 months out. My facial nerve was left in tact, but seriously stretched. This past October I started to see a little movement. As of today, I can now make a closed mouth smile. Yesterday I saw my Dr. He told me that I was probably not going to see anymore improvement given that I'm approaching the 18 month mark. I am very upset by this. I was feeling optimistic until my Dr. visit. My question is. . . has anyone out there continued to gain facial recovery after 18 months? Should I just give up or should I continue to feel positive about moving forward? Any advice or experiences to share would be welcomed. Thank you.
Stewie

[1wareagle]

Stewie,

It's only been 3 months since my surgery so I can't help you, but I was glad to read that you can now make a closed smile. Can you blink your eye yet? I have no movements yet and naturally when I hear that someone else has started to get movements I want to hear more.

Ellis

[amymeri]

All I will say is that I have heard doctors say no improvement is possible after 6 9, 12 and 18 months and I have heard plenty of people mention they have continuing improvement after 2 years.

I think that if you had NO movement at 18 months the prognosis would be bleaker...but it sounds like your nerve IS healing and it can't read a calendar!

I think you have plenty of reason for optomism!

[nancyann]

Hi Stewie:  the neurologist I go to for facial EMGs said it can take 2 years for nerve regrowth.   I'm 10 months out with no movement at all yet, but am still hopeful, & if in the end I don't get movement, I'll probably opt for the 12/7 jump.   Like Amy said " nerves can't read calendars"      KEEP THE FAITH GUYS!!!!
GOTTA LOVE YA  AMY!!!!   Nancy

[Jeanlea]

Hi Stewie,

I'm almost 20 months out.  I'm still seeing improvement.  I can make a closed mouth smile, too.  I see more and more of my face moving.  It's moving closer to my eye, but my eye still isn't blinking.  I hope that it will continue to improve.

Jean

[Jill Marie]

Hi Stewie,

I'm also fairly new to the forum but not new to facial issues.  I had a Facial Neuroma removed in 1992!  The most important thing I can tell you is despite the fact that we wish the doctors new everything & the doctors wish they new everything, they just don't.  The day before my surgery the doctor told me I wouldn't blink, my eye wouldn't close & I wouldn't drink from a straw.  The day after my surgery my eye blinked when my other eye blinked, it closed (90%) when the other eye closed.  When I was finally ready to eat and drink I tried to drink from a glass and the milk ran down my chin.  I got frustrated and my husband suggested I try the straw, I told him the doctor said I couldn't use one, he told me to try it anyway, I did and it worked just fine.  In fact, to this day I use a straw a lot as I have a bit of trouble with some of the water bottles we use while hiking.  I think for the most part I use a straw whenever I can just because "I CAN"! 

The doctors tell you what they think will or will not happen but they don't know for sure.  I started to regain the use of the left side of my face 6 months after my surgery as the doctor thought I would.  He told me my eye would water again within 2 years, it still doesn't. I can't tell you exactly when the improvement in my smile came about because I was to busy raising children and working to detect all the improvements.  I do know that I noticed improvements over the YEARS as my face grew stronger from the use of the muscles and the other nerves taking over for the nerve that could no longer do the job.  What I'm trying to tell you is DON'T give up hope because of what a doctor tells you. He may be wrong but if he's right you will be ok.  I have a closed mouth smile too, I also have a husband of 30 years that loves me & a job that I got 3 years after my surgery. Good-luck, Jill

[stewie]

Hello to everyone that responded to my question on facial nerve recovery time!

WOW! I can't thank you enough. Everyone's comments are so positive. Thank you thank you! I've decided to NOT give up! Today I'm feeling much, much better about my situation and all of you people have added to my optimistic outlook.

I like the calendar comment. It's so true. Everyone's body heals at a different pace. I'm always told that my tumor was "so unusual" and that my recovery has also been very unusual. Why should I give up just because I'm approaching 18 months?

Thanks again for all the encouragement! I hope that I can offer the same for someone else!
Stewie

[stewie]

All I will say is that I have heard doctors say no improvement is possible after 6 9, 12 and 18 months and I have heard plenty of people mention they have continuing improvement after 2 years.

I think that if you had NO movement at 18 months the prognosis would be bleaker...but it sounds like your nerve IS healing and it can't read a calendar!

I think you have plenty of reason for optomism!


Thank you so much for your input! I totally agree with you. I wasn't sure, but I thought that once before I've seen people post information that they have seen recovery long after 18 months.
Thank you again. I love your calendar comment. . . .you're so right!

[nancyann]

Yeah Stewie:  I find it's so much easier to deal with the paralysis knowing others are in the same boat,  granted, at different stages, but we all know how it feels, etc.
Believe me,  just your writing in about it helps,  we're not alone.....
Best wishes my friend,  Nancy

[stewie]

Nancy,
I was reading before about how you feel about the facial issues. It's really upsetting, I know. You have a wonderful outlook. I'm sure everything will work it's way out. Someday all of this stuff will be long behind us and we will be laughing and smiling along with everyone else! I know it will be!!

Your friend as well, from across the miles,

Stewie (real name is Kathy)

[Jeanlea]

Today I saw my doctor for my 18 month check-up.  (Really 18 months.)  He told me the MRI I had taken last month looked fine.  He was surprised by the amount of new movement he saw in my face since he saw me at 12 months.  He thought that what I had at 12 months would be what I would have.  He was thinking recovery was complete.  After seeing me he says he doesn't know when recovery will be complete.  I asked him about facial retraining.  He thought that would be a good idea now.  At 12 months he didn't think it would help.  I go for that appointment on June 5.  I'm also seeing another doctor about my eye.  I may need to get the lower lid lifted again.  That sounds much better than haveing the corner of my eye sewn shut more.  The last lower eye lid lift seems to have "fallen."  The doctor seems to think it may last better this time because of the increased movement in my face.  I go back in a year for another visit and get another MRI.  He's also going to check my hearing then.  If that is good, then I get to skip a year. 

Jean

[Joef]

My surgery was Aug 05 ... I and still seeing improvement ... and my face was DEAD after the surgery .... I could not drink from a glass at all - used a straw .. I bet I received funny looks the first time at a bar , I ordered a beer and a straw !!...

had a checkup recently .. the Doc. told me he as seen patients see improvment up to 3 years! .. but at this point he did say it will never be 100% ... but I will be better yet (I can have a small smile, drink from a bottle.. now)

[daylilly]

My surgery was July 05. Though I recovered tone, I never recovered much movement. I can drink from a cup and blow out candles but I
never recovered even a closed mouth smile. It seems that my lower lip recovered but not my upper lip. The doctor referred me
to a plastic surgeon to ask about tucking up the lip so that I do not have a perpetual frown. I have not made that appointment yet.
I have been doing Mom things instead-much more fun. Our oldest just got accepted to college, our middle is starting high school, and
youngest is still finishing elementary school. I just started volunteering in the elementary school library which I used to do before the surgery.
The AN side of my face still feels uncomfortable and I wonder if it will always be that way. It has never seemed logical to me that if
the nerve shows some sign of recovery that it would not continue. Hoping for continued improvement for all.
                                                                                                                                                              Sue

[nancyann]

Hi Sue (daylilly):  Thankyou for the well wishes to all of us waiting for facial nerve regeneration/rejuvenation/any-nation !!!!
                       I'm only 10 months out,  still no movement, but I've been going for acupuncture (anyone who fell off their chair laughing about this get right back up !!!   I'll try anything !!!!), & am hoping, hoping, hoping.    Have you had any facial EMGs done? I'm having them routinely, every 3-4 mos, next one 5/29; once I don't show any more signs of nerve regeneration then it's onto the surgery slab again for a 12/7 jump.  I think that maybe the nerve is trying to do the best it can, & I geuss sometimes it can only get so far along & then that's it.
Wishing you good thoughts & happy days,   Nancy

[stewie]

Joef,

I thought I had read somewhere that patients can recover and see improvement for years, just as you said. I think its great the a Dr. was honest enough to say this--and not just cut someone off at the "expected recovery time"!
Thank you for your reply--I hope that you continue to see improvements! That drinking beer from a straw has to be a real experience! Good luck to you. . .
Kathy