Facial Nerve Recovery after the 10 month mark - how did others go?

[HJY]

Hi All!
Hello from Down Under!
I'm nearly 10 months post surgery for a left sided AN.  I had the facial nerve traumatized in the surgery.  It was able to be stimulated at the end of surgery but it took quite a lot of stimulation to give off a signal.

I first got reasonable tone and symmetry back and at rest looked OK by 3-4 months.  My eye was still very 'stary' but gradually began to look more normal.  I got a tiny mona lisa type smile back at 6 months.  I would say I looked noticeably amused - but it wasn't enough of a smile to look really happy!  From 6-8 months I started noticing some synkinesis - mainly my eye 'winking' when I purse my lips, chew on the AN side or yawn. Others don't notice it and it mainly frustrates me when i smile and my eye appears smaller than the other.  My smile now is a reasonable closed lipped one but still asymmetrical.  You can see that Im smiling and ive got 'life' back in my AN eye!  My eye closure is very good and although I use lacrilube at nigth I have days where I dont need drops at all!
Lately what Ive felt is a 'burning' and tight sensation in my cheek and near the corner of my lip - particularly when I try to smile.  It feels like the muscle burn you get when you are really working a muscle group in exercise.  Ive tried stretching which relieves it somewhat.  My main concern is that my lips move very minimally out towards my cheek when I smile and this doesn't seem to have changed much for a few months.  Recently I think it got a little 'sharper' and higher but not much.  Other parts of my face have continued to get better but not my smile.

I guess what I'm wanting to know is - was the 10-12 month the point where recovery stopped for you, or can I expect some more improvement?  I feel terribly sad when I laugh or smile and see that my 'big' smile is still very asymmetrical.  I also still find that my lips on that side are quite weak - I find it hard to drink from a water bottle as I cant get enough lip seal.  Id love to hear from you about what sort of recovery you all got from this point on.  I think I need some hope that it can still get better than it is at the moment!

Take care,
Heather

[saralynn143]

Heather, I am more than three years post surgery (for hemifacial spasm rather than AN, but the facial side effects were identical), and I am still seeing progress. I'm not back to normal, and probably never will be, but in day to day life most people don't notice anything amiss.

Please read Jeanlea's awesome post entitled Facial Progress at http://anausa.org/forum/index.php?topic=7247.0 for inspiration.

Your description is both familiar and typical. Given the sensations you are experiencing, I do believe that you will continue to see improvement.

Hang in there. Time is our friend.

Sara

[deheisel11]

Heather,
I am 16 months post translab.  My journey has been almost exactly like yours.  My improvements have slowed up but they still continue at a very slow pace.  I have recently had some friends and relatives that haven't seen me in about a month and they all remarked that they saw a lot of improvement.  When you look at yourself in a mirror every day, the changes are very small but they add up over time.  Check with someone that hasn't seen you for a month or more and see if they notice any difference.  Best wishes for you on your healing.

[Brewers7]

Heather,
     At 1 year I was symmetrical at rest, but I did not see any movement until about 18 months.  Sounds like you are in better shape, so you should continue to see improvement.

[jazzfunkanne]

hi heather , my experience is like yours i still see slight changes nearly 5 years on, dont give up x

[Debbi]

Hi Heather,

As everyone else said, don't give up!  I am 3.5 years post op, have been to see Jackie Diels for facial retaining twice, and still seeing changes and improvements in my face.  I have never regained tearing in that eye, but who knows?  It could still happen.  As Saralynn said, I know my smile will never be quite the same, but I also know that most people don't even notice my slightly asymmetrical smile!

Hang in there!

Debbi

[TOM]

I am 13 months post op and have also tried accupuncture which helped in the beginning but now development has completely stopped.
I guess this is common for all of us, we notice a quick change between 4 to 10 months and then a very slow gradual change.

[HJY]

Thank you everyone for your encouragement and sharing your experience! I've been trying to give an update but for some reason I couldn't log on!

Unfortunately I had some recent hearing loss in the AN ear - it was only mild with tinnitus then suddenly it's a moderate loss with roaring tinnitus. They are saying I will likely need a hearing aide My baby turns one next week and I'm only 39! Not what you like to hear.

My face has had a tiny improvement since writing this and my surgeon said improvement can happen up to 18mths with most movement gained back in the first 6 mths from when it starts. But it sounds like some of you have had better than that so I'm optimistic!

I've started steroids for the hearing to see if it'll improve but one thing I noticed is the sensation of my AN side of my tongue feeling burnt. This was terrible after surgery but went away some months ago. I've also had tingling around my lips on the left side. I had an MRI and the doctor can see no reason for this and hence has no solution.

Has anyone else had this 'burnt' feeling come back?

Thanks,
Heather

Ps I may pist this as a new topic!

Has anyone else

[dd]

Hi Heather,
I am at 11 months, post retro-sigmoid surgery. I had a full facial paralysis. Doctors were puzzled because the nerve appearad intact and healthy. I have gained movement very similar to yours. My face is symetrical at rest but I have an uneven smile and my face contorts a little, when I talk. I do have a tooth ache type feeling and twitching. I tell myself it is a good sign, because something is happening. I have had a burning type sensation on my cheek. I hope it means nerves regenerating. The healing is slow and I don't notice big differences, but when friends see me, they say there is a noticeable difference.
Hang in there.

[HJY]

Thanks 'dd'!

I've recently gotten a tiny millimeter increase in my closed mouth smile. I had heaps of tugging, crawling type sensations just before. I think the frustrating thing about it being so slow is by the time you notice the tiny new improvement it hardly seems that different at all!