Author Topic: Facial nerve intact - how long till you got movement?  (Read 7871 times)

HJY

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Facial nerve intact - how long till you got movement?
« on: January 22, 2011, 01:23:04 am »
Hi all! I am new here but have been 'lurking' for awhile!! I had a middle fossa approach to remove an AN on December 6th 2010. My balance has been recovering well and they preserved my hearing which is quite reasonable. I've got a horrible high pitched tinnitus and still feel like I'm on a boat most of the time!! I've just hit the six wk mark and have just plummeted because I can't seem to cope with this facial paralysis. I had hoped I'd be showing some improvement by now. My facial nerve was preserved but could only be weakly stimulated at the end of surgery. I was initially drooped but am now symmetrical at rest. You can notice it when I speak and try to smile. My eye is actually almost closing now. I'm a Speech Pathologist, so am finding it really hard hearing my own speech affected! I have had weird twinging sensations and a 'pulling' around my lip area. For some reason despite these signs and the fact the Drs say it will come back, I just can't believe it. Would some of you with similar backgrounds please share your experience with facial nerve recovery? How long did it take and what preceded movement for you? I need some hope here!
Thanks!
1.4cm L sided AN removed 6th Dec, 2010 (7 weeks after my 3rd baby was born!)
Surgeons - Proff Marcus Atlas & Dr George Wong, Ear Science Institute, Perth Western Australia
Mid Fossa,Hearing preserved,HB level 6 facial palsy Balance
issues
1st Oct, 2011 - Facial recovery HB 2-3, sudden HL of 30dB

Kaybo

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Re: Facial nerve intact - how long till you got movement?
« Reply #1 on: January 22, 2011, 07:16:58 am »
Hi HJY - glad you posted with us here!

I think that the fact that you have gotten so much back so far is a GREAT sign!  My face never "came back" at all and at a year I had the 12/7.  After being on this Forum, I have, at times, wondered if I did that too soon because many people have regained movement YEARS into their recovery...then I remember that they, like you, improved some in that first year.  My face was DEAD and I had NO MOVEMENT at all in that first year.  I am a believer that you can't live in the "what if" and I have to remind myself that I did the best that I could at the time, but I also REALLY BELIEVE  now that because I had no movement that first year, I wouldn't get any.  YOU, however, have made LOTS of progress!!  It is easy to get discouraged, but sounds like to me that you are on the right track...& hey, at least people remember your face!!  ;)

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl R

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Re: Facial nerve intact - how long till you got movement?
« Reply #2 on: January 22, 2011, 08:11:23 am »
Hello and the facial paralysis is frustrating.        I have NF2 found after my first AN surgery at 49.      My first surgery was mid fossa and took 3 1/2 mo to get back to pretty decent amd more over time after that.           I am now a retired nurse and was back to work in 2 mos and was not fun to not look right.     My co workers were wonderful in being around me.              5 yrs later I had a facial neuroma with nerve graft done at same time and then was told it would 8 mos for movement to start.       I do not have full movement but did end up with an ok look at rest.           I hate to say this but I do not remember exactly how it did feel as it came back.     The nerves can be very slow to heal.      Some facial therapists do not want to do much till almost a year after surgery to see how the nerves are doing.         Sounds like you are making a slow progression of the nerves and will be back to normal or close to normal in time.         The wait is hard so don't give up!       You are still not that long past surgery even though it feels like it should be.  This is a slow recovery and was major brain surgery!         Being able to vent here does help!
                                                                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Tod

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Re: Facial nerve intact - how long till you got movement?
« Reply #3 on: January 22, 2011, 09:15:00 am »
Hi HJY,

I think it was right about 6-8 weeks post when I realized I could create a twitch in my cheek. Another six weeks and I was at 80% of function or better. Typically only professionals or folks with similar issues notice any difference now. My wife was driving us down to our son's college to watch him play baseball. It is about a 4 hour drive and all I could do was sit (I had very limited ability to speak) and try to move my face. All of a sudden, there it was, a little twitch. It took about 15 minutes until I could do it again. I was able to do it 4 or 5 times that time. I pulled the vanity mirror down and was able to see something happen. It wasn't much, but it happened. After that, it moved faster. I still only have about 90% of full function, but that 10% is so minor to me, especially with ongoing speech and swallowing problems, but everything continues to improve.

I'm with Kaybo, I think that you have so much improvement already is a really good sign. There is a tremendous difference between drooping and symmetrical at rest.

Be patient...it sounds like you are on the way! Almost a year out, I still suffer from the pulling sensations. I think these are the result of the affected areas simply working a bit harder.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

kim508

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Re: Facial nerve intact - how long till you got movement?
« Reply #4 on: January 22, 2011, 09:44:41 am »
Hey i feel like i was in the same situation about a year ago.. My facial nerve was testest at the end of myt AN surgery but after 8mouths I kinda gave up that it was gonna come back on its own. I found out that iven though it was still entact it lost blood supply..which i didnt know know could happend. I mean I dont know ur situation and hope u get imporovment sooon :) but for me I decied to have surgery for my facial paralysis 10 mouths after my AN surgery. And now pationtly waiting for movement. I would keep your hopes up but at the same time education urself if you think you want to do some kind of surgery or rehab Good luck its only been a small time for you..the harderst part is knowing that this is a process .
Kim

deheisel11

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Re: Facial nerve intact - how long till you got movement?
« Reply #5 on: January 23, 2011, 07:20:34 pm »
HJY,
Initially I was told that my facial nerve was abraded and I had facial paralysis.  I  got symmetry about 6 months after the surgery.  I asked for the surgery report that said that my facial nerve had been transsected and approximatey put back together with surgery wax.  I am slowly getting movement back at only 8 months.  Hang in there.  Any movement in less than a year is positive.  Keep healing!  :)
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

vickee

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Re: Facial nerve intact - how long till you got movement?
« Reply #6 on: February 04, 2011, 02:22:08 am »
I was told after surgery that my facial nerve was intact, but it felt like ages as months went by and no movement.  At the 6 month mark my neurosurgeon suggested we consider nerve grafts, but my ENT suggested we wait.  I got first signs of movement 9 months post surgery.  I was finally able to fully close my eye bad. But it didn't close tightly.  It would close 85%.  Then slowly fall to complete closure.  I'm currently 17 months out.  My face has dramatically improved.  I can wink and my smile is at 50%. But not back not normal.  Its been a process and does require lots of patience.  Good luck on your recovery!  Keep your head up!
4cm L AN
9/09 Translab  Dr. Backous ENT, Dr.  Farrokhi Neuro
10/09 CSF leak repair
11/09 LP shunt

lori67

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Re: Facial nerve intact - how long till you got movement?
« Reply #7 on: February 04, 2011, 07:30:08 am »
Hi HJY.

As you can see from the great responses you've already gotten, this whole nerve healing thing requires a lot of patience....which is something some of us (me) don't have a lot of.   ::)

I can imagine how much harder it is for you to hear your speech not sounding quite right.  I was very aware of my speech too.  Turns out, I was the only one who noticed anything different.  I will say, you are still in the early stages of recovery and you have a lot of healing to do.  I'm sure, like mine did, it will get better.  My facial nerve did not start working on its own after my surgery and at 18 months post op I had the 7/12 nerve graft.  In that period of time between the initial surgery and the graft, my speech did get back to normal, even without the functioning facial nerve.  Somehow you find a way to get your body to cooperate with your wishes.  Be patient with yourself.  It sounds like you're already making progress...slow and steady!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

rayden1

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Re: Facial nerve intact - how long till you got movement?
« Reply #8 on: February 07, 2011, 02:01:59 pm »
Hi HJY

I know exactly what you are going through. It is very frustrating. I had translab surgery 2007. You are doing so well. I think it was about 9/10 months until I noticed any Imprrovement.
I used a device called Neuro 4 under direction of physiotherapist 4 months post surgery. It was very good if a little tiresome. Lots of patience required here. When I was told that I wanted to kill someone. Doing ok now. When my Dr told me the nerve was as good as it was going to get I got botox to help and it is great. By the way my nerve was not severed just severely stretched and root of tumor remains so am I suppose watch and wait now. Good luck to you. Thoughts and prayers with you. Keep us posted.

Annx

moe

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Re: Facial nerve intact - how long till you got movement?
« Reply #9 on: February 08, 2011, 08:18:09 am »
HJY,
Great posts from everyone. Just wanted to welcome you to the forum.
As stated many times, your surgery was in Dec, and you are already seeing good progress! Really that is big progress, compared to other stories.

Understand the frustration of being speech pathologist, and working with the facial regression, soon to be progression.
I'm a home health nurse. Had my eye half stitched shut post op due to facial nerve cut :( but continued to work very part time. Patients were very receptive to the fact that I was even working!

So be an example of perseverance to your patients, they may appreciate it:)

Good luck, let us know how things continue to improve.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Darren

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Re: Facial nerve intact - how long till you got movement?
« Reply #10 on: February 08, 2011, 04:07:28 pm »
HJY -- For me it was 6 months post op that I started to see some movement-- It was tiny but it was there-- Looking back at pictures around that time frame my face was still sagging.    Now my face is perfect in resting position-- Smile at about 75% complete with some synkenisis.  I have been seeing Wanda Crook and will start botox in March!  This should help my smile greatly! Very stoked!

DG

TOM

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Re: Facial nerve intact - how long till you got movement?
« Reply #11 on: February 17, 2011, 07:52:15 pm »
I had my surgery in August 2010 and I started to see some movement in 6 weeks. Since then I had gone for accupuncture sessions and I think they are helping expedite the movement. 

stoneaxe

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Re: Facial nerve intact - how long till you got movement?
« Reply #12 on: February 18, 2011, 12:30:14 am »
My nerve response was good after surgery but a few days after my face was drooping, no smile, couldn't close my eye. Things slowly got better though. I was able to close my eye about 3 months after surgery (very important to me as a surfer), most of my smile came back around the same time. At rest my face is fairly symmetrical, slightly noticeable around my eye at rest and my smile is lopsided. I did develop some synkinesis...I cry when i eat...especially spicy foods...and my nose tends to run. in the grand scheme of things these are minor annoyances...i've been very fortunate.
Your mileage will vary...every recovery is different.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

HJY

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Re: Facial nerve intact - how long till you got movement?
« Reply #13 on: March 14, 2011, 07:42:03 pm »
Thank you so much everyone! And sorry it's taken so long to reply - I forgot my username and my password!!! I have got a tiny twitch!! It's in my lower lip/cheek area. Also feeling some slight tugging in my cheek area when i try to smile. Still no actual movement of my lips though. I can purposefully move the area with the twitch and when pursing my lips I can see and feelore movement on my AN side. One thing that got me worried was the Physio said that movement is  normally seen first in the middle region of the face (nose and top lip) and it may mean that branch was more damaged? Has anyone else had first movement on the lower lip and still gotten good recovery elsewhere?
Thanks so much everyone for your support!
Take care,
Heather
1.4cm L sided AN removed 6th Dec, 2010 (7 weeks after my 3rd baby was born!)
Surgeons - Proff Marcus Atlas & Dr George Wong, Ear Science Institute, Perth Western Australia
Mid Fossa,Hearing preserved,HB level 6 facial palsy Balance
issues
1st Oct, 2011 - Facial recovery HB 2-3, sudden HL of 30dB

moe

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Re: Facial nerve intact - how long till you got movement?
« Reply #14 on: March 15, 2011, 08:45:00 am »
Heather,
That is encouraging news! Keep looking for the small signs of progression. That is how it works.

I don't have any personal experience in the movement category, since my facial nerve was so stubborn in recovering. (cut,directly reattached during brain surgery- minimal results)

 Any movement is a good sign in my mind, but maybe others will chime in. Keep looking at yourself in the mirror and practice pursing your lips and moving your mouth gently. My advice is don't try to force it too much because of the synkenesis phenomenon that can occur post op.

Cheers :D
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

 


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