New with facialis

[irisor]

Hello,
I am now recovering from surgery, which took place about 10 days ago. I had a 2.6 cm AN compressing my brain stem. The surgery was successful, and the tumor was completely removed, with no further complications except for facial paralysis. The surgeon said that my facial nerve was stretched but not damaged. I can't close my eye, I can't smile, and it is really horrible when I eat. I am still hospitalized and I am supposed to have some test for the face nerve in the coming days. 
Today I went for a walk outside, and I suppose I was totally unprepared for that, because the sun was very strong and I got dizzy, and I realized I had to take my sunglasses with me.
I read here a lot of optimistic stories, and I understand I have to have a lot of patience, but I would appreciate it if you could give me some tips and tricks how to get alone with facialis without looking too "strange": Is there a more pleasant alternative to the plastic cover I have to wear on my eye? How can I eat sociably? what else can I do so that I won't look too freaky? I know that I have to learn to live with myself the way I am, but it is still difficult for me.
I also apologize for my English, as I don't speak English too well.

Iris.

[Debbi]

Hi Iris,
Reading your post reminded me of the first few weeks after I had surgery and was dealing with facial paralysis.  I don't think it is anything any of us are really prepared for. 

First off, good news that the doctors say the nerve is only stretched.  Did they make any predictions about how long it might take to heal?  It is very hard to know how long these nerves take to get back to "normal", so don't get discouraged.

I had the same experience as you the first time I went out in the sun - it really hurts!  I wear big sunglasses all the time outside because me eye is still sensitive to bright light.  If you can find glasses that have some protection on the sides, this will help protect your eye from wind.  I am sure you know that you need to be very diligent about keeping that eye moist. It is very likely that your ability to produce tears in that eye is affected, so you probably need drops or gel.  My eye closes now, but still doesn't tear so I keep gel in it day and night.  I use Refresh PM gel.  It is very thick but it keeps my eye moist.  One thing you may want to ask your doctor about is whether you should get an eye weight.  This would help you close that eye.  You can get gold or platinum weights surgically implanted, or you can use a stick-on weight called Blink-Eze.  Is used the temporary weight for about 4 or 5 months and it worked great.  Did the doctor say how long you needed to wear the eye cover?  I never had to do that, although I did have to tape my eye shut at night.

Eating is a challenge.  I found that food was constantly falling out of my mouth and I wouldn't know it because that side of my face was numb.  It is kind of funny now, but didn't seem very funny then.  . The best suggestion I can make is to take very small bites, and keep your napkin handy.  I would also avoid sandwiches because it is very easy to bite your lower lip when you are trying to bite the sandwich.

It is very hard not to feel self conscious about the way you look.  I felt that way, too.  There isn't much you can do about it, though, and you
don't want it to keep you from getting out and doing normal things. 

One important thing is try NOT to force your face to move.  It is very tempting to do that, but it can actually do more harm than good. 

Please feel free to PM me if you have questions, ok?  And, I think your English is great!!

Debbi

[Suu]

G'day Iris
I have left side palsy and I'm 'getting used to it' oh so gradually.  I'm 10mths post-op.
I drink everything through a straw and I eat with a teaspoon.  There are so many disadvantaged and disabled people around these days that hardly anyone takes notice.
When we go out for a meal I always ask for a straw and a teaspoon and some service workers stick around to find out what I'm going to do with them LOL
We also have a couple of regular places we go for a cuppa and the straw is automatically put on the saucer.

It's not easy emotionally at the start and I had a very hard time coming to terms with how I look and what I'd needed to do to get through it.

I don't wear a cover over my eye as I use Lacrilube (like petroeum jelly - vaseline) and drops to keep my eye from drying out.

The big thing I realized is that I'm still me on the inside and I don't have to look in a mirror if I don't want to 

Please do let us know how you're coping and what we can do to help?

Lovenhugs,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu

[irisor]

Thank you Debbi and Suu, you are very encouraging.
My doctors say that it would take some months but they think it will definitely improve a lot, but somehow I don't fully trust them on this.
They also said I should wear the plastic cover as long as my eye won't close, they didn't mention the eye weight yet.
and thank you Debbi for the advise not to force my face to move, I know what you mean. I do that. what harm does it do?

Iris.

[Suu]

Hiya Iris

I hope this helps a little bit - the smaller the tumour the better the outcome.

Mine was 4cm with the facial nerve stretched right over the top of it.  My surgeon kept saying that I'd get it back but I ended up having nerve conduction studies done (electrical impulses to see if the nerve gets any messages) and found that the nerve had indeed stopped working.

If you aren't getting any feelings of it reanimating within 6 months then maybe you could ask for this test?  I don't don't what they call the tests over there but in Australia the tests are called Nerve Conduction Studies and Electromyography (NCS and EMG) - I had both.  One uses small pads on the face and the other uses small needles into the face muscles.

It's early days and you sound like I did - I wanted movement and I wanted it fast.  The people here on the site quelled my anxieties a lot so do lean on us as much as you like.

Best wishes,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu xxoo

[irisor]

I read that if there is paralysis right after the surgery, then the odds are not too good.
is there any hope that it will fully recover in a year?

[nftwoed]

Hi Iris;

  I feel the gold weight should have been mentioned by your Dr. I wonder why not? You can tape it shut at nigh or anytime really. I would use soft, cloth adhesive tape or a bandaid of the same material if you are going to do that often. The Lacrilube should be applied first, however.
  Re, recovery after immediate facial paralysis, your chances are very good for recovery as long as the nerve is intact and not damaged. Some take as much as two, or even more years, however, to see a lot of progress. The facial nerve is a motor nerve so does regenerate if damaged, reattached, stretched, smashed, etc. Vestibular and auditory nerves are sensory nerves so those do not regenerate.
  Keep it lubricated as per other posts, OK? And maybe ask about the eye lid weight

[saralynn143]

There is a good explanation here:
http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm

It's true that the odds for recovery are better for delayed than for immediate paralysis, but there is still a chance for significant recovery depending on the type of injury to the nerve.

I woke up to paralysis, and my surgeon, though my nerve was responding throughout surgery, told me that he had a bad feeling about my nerve and told me to look into nerve-jump surgery. My avatar picture was taken at fourteen months post-op, and now at three years I have even more recovery. Not back to normal, but most people don't notice.

I wish there were a way to predict how much recovery you will get in a year, but there just isn't.

As to why Debbi recommended not forcing your face to move is that it may contribute to synkenesis, kind of a crosswiring of the nerve branches as they heal, which leads to unwanted movement such as eye closure when you eat. A nerve specialist that I consulted recommended that I do nothing but let my nerve heal for the entire first year.

[irisor]

Thank you all for your advise and wisdom.

I will ask about the eye weights.

Thank you saralynn for the article, it is very interesting.

[deheisel11]

Iris,
I am not sure that you have seen my previous posts, but my tumor was also 2.6 cm.  I had translab surgery with facial paralysis being the only negative outcome.  My facial nerve was not cut but possibly nicked removing the tumor.  I have just past my one year anniversary and my facial symmetry has returned.  My eyelid still droops but the muscles around the eye have begun to move.  Things can get much better with time.  As for the looks, my friends and family did not make a big deal of it after the surgery.  They were the only ones that their reactions I worried about.  Best wishes for continued improvement.

[Brewers7]

   As to the eye issues, I taped my eye shut for several months.  When I got tired of that, I had a weight put in.  After about six months, I had it removed.  By then I had enough closure to sleep without taping.  The only reason that I had it removed was because I had returned to work and it caused my lid to droop.  People would therefore assume that I felt bad.
     Eating in public has been a real adventure.  I too have learned not to order sandwiches or things that are difficult to chew.  I often keep a napkin over my mouth when I chew and I check my chin every few seconds for spills.  (It drives me crazy when complete strangers tell me that I have food on my face.  I keep reminding myself that they mean well.)