facial palsy? - can you share your experience?

[michaela]

hello,

I already had one surgery, one Gamma-Knife-treatment and another surgery on my Acoustic Neuroma, and now it is growing again, so I'll have to chose another treatment. Since radiation has its risks and no one can tell me whether it will work the second time, one choice could be to fully remove the tumor which at this point, according to a renowned surgeon in Europe who did the second surgery is only possible if the facial nerve is severed. he would do a hypoglossal-facial anastomosis during the same operation. I have had a temporary grade 3 palsy after Gamma-Knife and I am just now recovering from a grade 4 palsy after my last surgery. and I am trying to imagine what a fully cut facial nerve would mean. with my first palsy I found it hard even to say a couple of works. it felt like if I had to move with half of my mouth the other half which was "of stone".

so, if I chose the total removal of the tumor and a nerve graft: can anybody tell me what to expect in everyday life? How long will it take until things get back to "normal", and how "normal" could that be? would I be able to work as a foreign language teacher or would it affect my pronounciation even on the long run? is there a lot of therapies involved to get back to "normal"?

during my research I ran into this video, and I wanted to ask: does this woman have a full facial palsy? I have the impression that her cheek is moving a little. so, is she a good example for what I might be facing or rather not?
 
http://www.bbc.co.uk/news/health-20353061

I would be grateful if you shared your experience!

michaela

[Cheryl R]

Michaela, I had a facial neuroma in 2006 which did have the facial nerve severed.    My surgeon then at the same time took a piece of nerve from by my ear and grafted in.      I was told it would take 8 mos or more before movement and that was about right.      I do look ok with my face at rest and do a closed mouth smile as mine is not quite right.    I did not have a gold weight put in the eye lid as knew to do very good eye care from a previous temporary facial paralysis.     I have NF2 so had a regular AN on that side earlier.    I did get eye closure in time but do use gel at night as it must not close well all night.    I don't have movement around the eye brow.   I  do have some tightness down by the lip area which I feel some but look ok.     I was back to work as a nurse in 2 months.     I hate to say but some of the details for immediately after I have forgot as this was in 2006.         Some of the eating and drinking was harder.   I know had some speech issues but must not have been real bad or would remember.           I have some synkinesis with some eye closure when do do a real smile or drink with a straw.      I feel fortunate that have done as well as I have.          We don't get a choice though.     My profile pic is after the surgery.              I wish you well and hope for the best for you.              Cheryl R

[nftwoed]

Hello michaela;
   But; If I understand correctly, GK did not work the first time. If they are saying surgery will require severing the facial nerve, I'm missing the point with hitting it again with radiation. Seems that would only make the 12/7 anastomsis more challenging?
   It could take 2 or 3 years to regain full function if it is destined to appertain to complete normalcy.
   I don't believe people are going to notice a weakness much.
   Maybe you can initially work with a speech pathologist on word pronunciation? I don't know how long, or how severe it would be. Others on the site may, and I hope they come forward.
   Re, the video, I can't hear, but it does not look 100% palsied to me. I believe to have seen the other side move at some points. I don't find her appearance offensive at all. Of course, it is not happening to me and I've seen several.
   One must do what they need to do and it seems your options are few.
   How old are you Michaela? The bugger is aggressive!
   Best wishes in this, and may the Lord protect, bless, guide and keep you throughout.

[saralynn143]

The video was dated 16 November 2012 and Amanda said that her surgery was the 14th of October, so she was only a month out when the video was made. If the nerve is intact, but damaged, the first movement may be seen at about the three month mark. With a nerve jump, I believe it's about 6 months. I think the movement that you see in her cheek is because her facial muscles is flaccid at this point and reacting to the movement from talking. I remember jogging at about 6 weeks out and feeling that side of my face flop up and down. It was weird. It doesn't do that any more, by the way.

My profile picture was taken at 14 months post-op. The biggest gains occur within the first 18 months, but can continue for years. At five years out I look relatively normal with a neutral face, have a decent small smile, but I'm pretty sure my big grin is gone forever. My eye does not blink. I have a platinum eyelid weight and wear a scleral contact lens in the left eye.

You will have to find your own "new normal." I no longer think about my facial issues every day, other than to put in the contact. At first I would dream about being able to smile again and be crushed when I woke up and realized it was only a dream. THat hasn't happened in years.

I know my lips don't move right when I talk, but honestly very few people ever seem to notice anything is different. If someone does, s/he usually asks if I have Bell's Palsy because either they or someone they knew had it.

It would be great to see how Amanda is doing now, at 10 months out. I bet she has seen some significant improvement.

I'm sorry you are going through this. I wish you well.

[alabamajane]

Hi Michaela,
I had my AN removed by translab surgery in Oct 2011, almost 22 mos now.. I too had my facial nerve severed and 4 days later the 12/7 graft you speak of preformed 4days later,,
I too did not see any movement for about 6 months, then nerve started regenerating and there has been SLOW but steady improvement since,, at about 12-14 months I noticed more movement in cheek/face area,, I guess muscles are coming back some ,,, I don't and won't have movement in eyebrow area, face looks pretty good at rest,, smile getting better,, won't ever be as it was and probably won't be good "open" mouth smile,, corner of mouth does not move much as I speak , but mot people don't have much trouble  understanding me if I speak up ,, my eye floss when I eat and smile,, wish it didn't but was told it would as it is "all"  connected now ,,,
I did not have facial reanimation therapy so can't answer how that would impact your recovery,, but patience will definitely be what you need most of as there is NO rushing the process ,,

Let us know,how you do,, it's a hard adjustment for sure,, and some days and some situations are better than others,, I am retired so don't have to be in public if I don't want and that helped the recovery I think.. Good luck. Jane

[nancyann]

Hi Michaela: I had restrosigmoid 6/2006, facial nerve severed then re-attached. I have Grade 6/complete facial paralysis. I chose not to have a nerve graft, mainly due to fear of any further nerve surgery (I was 50 y.o at the time).  I little over a year later I had the T3 surgery (temporalis tendon transfer) at Johns Hopkins/Dr Patrick Byrne.  This surgery stopped the drooping & I have a 'mona lisa' smile when I bite down. 
Another thing I recently learned about was the scleral lens (I see the eye surgeon on the video didn't mention it). I had one fitted in Feb. this year & it has changed my life, no more lubricant during the day - I still use lubricant at night w/ my NITEYE bubble bandage. I was so surprised my eye surgeon nor my ophthalmologist didn't know about the lens. I learned about it on this forum from Jill Marie.
I am so sorry you are going through this, I pray a nerve graft will work for you if your nerve is severed.  If not, there are options out there.
My life was changed forever, but adapting is the key. I was able to return to work 2 months post op, my co-workers are amazing, & so supportive.
Always good thoughts, Nancy

[michaela]

thank you  - I had to take some time off because I am completely overwhelmed with this whole situation, but I value your answers very much!
michaela