Facial Paralysis Recovery Timeline

[Sanderson]

I had surgery 5 months ago and the left side of my face is paralyzed. The surgeon left a sliver of tumor on my facial nerve in hopes of preserving the nerve.

Who has gained movement back in their face, and how long did it take? Did you do anything special or did movement return on its own? I’ve been told that three months is the magic number for facial recovery, but I’ve passed that.

Am I silly to think that a month or a few months from now that I could recover? Or, should I start planning surgery for a nerve graft or something else? I need direction!

[LakeErie]

5 months seems too soon to give up, I never heard 3 months before. I never had complete paralysis (mine was House - Brackmann grade 4) but I began to see some recovery in about 3 months following a taper of Decadron ( a steroid used for brain swelling.) I am approaching 2 years since the gamma knife treatment that caused the facial weakness and am now grade 2 paralysis and can close my eye completely, so I would say my recovery has been a combination of steroid treatment and natural recovery with time.

Oct, 2016  - GK after AN regrowth from radical subtotal removal microsurgery in 2011

Jan 2017 -  Facial weakness onset late in the month - mouth droop, no eyebrow movement, no lid closure

April 2017 - mouth droop and lid movement improved

July 2017 - synkinesis set in, termed  jaw - wink syndrome by an ophthamologist

Oct 2017 - MRI showed 100% resolution of swelling of tumor and the brain adjacent to the tumor

Jan 2018 - mouth droop still present but not noticeable, eye closed completely

Sept 2018 - grade 2 facial weakness seems permanent, 2 year MRI set for Oct 22

There is a Facial Paralysis Center at Univ of Pittsburgh Medical Center. Possibly they have information they could send you or even refer you to someone closer in distance for consultation ( you indicated Sacramento as your treatment location. )

https://www.upmc.com/Services/ear-nose-throat/services/facial-nerves-and-plastic-surgery/facial-paralysis-center

good luck

[Jill Marie]

Hi,  I had surgery in 1992 for a Facial Nerve Tumor, nerve was severed.  Started seeing movement 6 months later, was told it would take 6 months, not 3 months.  Be patient, know it's hard but give yourself time to heal, nerves heal slowly.  Good luck, Jill

[Nick.Dirkes@gmail.com]

Hi there,

I had improvement for the first 12 months, nothing at first but when it starts there is no mistaking it. The nerve sensations are definitely noticeable. I went from absolutely no control over the affected side of my face to about 50% function. (My own scale). Be patient.

[Sanderson]

Thank you for posting replies. I am trying to be patient with my recovery. It is good to have hope!

[lablove]

I continue to have improvement and decreasing facial paralysis since surgery over a year ago. I work with an occupational therapist specializing in facial massage as well as receive botox injections quarterly. The healing will continue!

[tugnutt]

Hi Sanderson,

I want to offer my experience, which isn't reflected here.  My AN surgery was done in October 2015. Despite the care taken by the surgeons to protect the facial nerve, it was apparently damaged. I waited a year plus for my nerve (left side of face) to respond.  I had started to despair!  On this bulletin board, I found a reference for a doctor at Johns Hopkins who had helped the poster recover facial movement.  I saw the doctor (Kofi Boahene) who told me that waiting can pose problems, as muscles atrophy and features can start to change. Regardless, he said he could help me, and we arranged surgery for a gracilis graft transfer.  The surgery was performed January 2017, and within 3 months, I had small - but definite - movement!

I have attached a link to my story.  It's hard to know the right time to pursue intervention, and I am so happy for people who have recovered their facial mobility without surgery! In my case, I was pretty sure it wasn't going to happen.  I am very pleased with the results of my surgery, and I hope this info helps you.

Kathy
https://www.hopkinsmedicine.org/news/media/releases/surgeons_transform_static_mona_lisa_smiles_to_joyous_ones

[Sanderson]

Thank you for your reply.  I am now eight months post surgery and have seen a specialist. He things that I am not going to improve anymore than I have, which is that at all. I am looking into having a nerve graft or another type of surgery. The surgeon I saw said that the 7/12 nerve graft was the most reliable option. But I am looking into going to San Francisco or the House Clinic/Institute in Los Angeles to see what they have to say. I still want to wait one year post-op  to see if a miracle will happen.

[Sanderson]

I am now officially 8 months post surgery with no improvement. Thanksgiving week was a rough one because reality started to really set in. I thought by the holiday season I would see some type of improvement. I still get nervous zap feelings in my mouth and just last week in my upper lip.

[Sanderson]

So I’m replying to myself. It’s 11 months post-op and I am not better. I am seeing a surgeon this Tuesday to gather options for surgery.

I try to fix my hair in the morning and go on with the day by never looking in a mirror.

[Jill Marie]

How did your appointment with the surgeon go?  I hope he had helpful news so you can once again look in the mirror!  Jill

[JLR]

Hi Sanderson, don't give up!! I had surgery November 2016.  Balance was terrible. Better now. Deaf right ear from surgery facial paralysis finally improving. Eye can finally close. I am improving very slowly but improving and it took 2 years!  Your only 11 months out. You are definitely going to improve. It takes a lot of time to mend those nerves. Be strong. It takes time. Regards, Joan

[Sanderson]

My surgeon consultation got rescheduled. I am totally rethinking surgery of any kind. I am very afraid of having atrophy in my tongue from a 7/12 nerve graft. Is there anyone out there who has something to say about tongue atrophy and nerve graft surgery.

I can speak clearly and have been able to continue teaching and for that I am thankful. My face looks terrible but everything else is good.

[ColleenS]

Sanderson, after my Translab surgery I had numb tongue and everything tasted metallic. That went away at about 6 months or so. After my radiation, my tongue is numb again but it is already getting slightly better after 4 months. These things take time but do go away...

[alabamajane]

Sara,
Sorry to be so late responding but I don’t come on much nowadays it seems,,, you may have made a decision one way or the other by now but here are my thoughts for what it’s worth to you,,,

I had AN surgery in 2011. My facial nerve was severed due to tumor growing through it. So 4 days later, up I had the 7/12 nerve graft. I have good facial tone and eye closure and a slight smile on the affected  side. I would not have any of that without the graft. My tongue on the right side is atrophied but honestly,, it isn’t a real big deal. I can talk clearly enough that folks understand me most of the time first time I say something. I truly believe that if I had had the gracilis flap surgery also ,, i would have a smile and all the rest.

I don’t regret having the nerve graft at all. To look at me,, you can’t tell face is paralyzed until I talk. Then I look a little like a pirate,, I like to say. Mouth doesn’t open fully on affected side.

Good luck to you. I fully appreciate how this affects us. It is hard to completely accept it and how it affects our self confidence and esteem. And few folks truly understand. I have a VERY understanding and loving husband without whom I’m afraid I would not have weathered this ordeal as well.

I hope you have found your answers by now,,,
Jane