question about facial issues (whether you had them or not)

[lori67]

I'll bet all these "definite maybe" answers make things as clear as mud, huh?   

It's true though - everyone is different - some people with small tumors have bigger problems than the ones with giant tumors.  You just never know.

I had numbness and tingling on the side of my face before diagnosis too.  My tumor stretched my facial nerve all out of sorts and while it was not cut during the surgery, it just was too damaged to come back on it's own.  At 18 months post op, I had a nerve graft done and I'm getting some movement back.  It won't be quite like it was before surgery, but like Kay said, it's really not horrible.  After a while, you just don't even think about it anymore and I've noticed that as long as you don't let it bother you or make an issue out of it, no one else does either.  In the big picture, there are much worse things we could have to deal with.

Most people have a more temporary facial paralysis so chances are, you won't have to deal with it long term.  I hope you don't have to deal with it short or long term, but don't get too stressed out about it.  As someone once told me, if you worry about something happening and it doesn't happen, then you worried for nothing.  And if you worry about something happening and it does happen, you still worried for nothing, because it didn't keep it from happening.

Let your kids keep you busy - that will keep you from having time to worry about anything.  Kids are good that way!!

Lori

[anissa]

Thank you all for your stories and honesty.  I'm really glad that I put this "out there" because the more I think about it the more its going to be ok.  Whatever happens.  This "situation" could be so much worse, I know it.  So, having said that, I'm ok with "maybe", good answer.  I'm hoping and expecting the best but I am aware that it may not go my way. 

Could someone please point out this post to me if things don't go "my way"?  Thanks in advance.   

Anissa

[Syl]

Anissa:

Is the survey still open for answers?

I did not have any issues with my facial nerve before surgery. The Drs. had to leave something like 1% of my tumor behind in hopes that after cutting off the blood supply, it would die off on its own. My facial nerve was preserved.

As soon as the Dr. woke me up after surgery, I reached for my face to feel my smile. It was all there. However, 17 days after surgery I had slight facial weakness. My smile was asymmetrical. I couldn't whistle. Water spilled out of my mouth when I rinsed after brushing my teeth or when I drank anything. I got a rx of prednisone. I took that for about 3 weeks. By the time I finished taking the meds, my face was back to its old normal self. For a few days after that I felt tingling on my AN side, at the edge of my mouth and by my eye--signs that the facial nerve was continuing to heal. Fortunately, it healed completely.

Syl

[anissa]

Yes, please, survey is still open!!!

Syl, I'm glad that everything worked out for you, thanks for sharing. 

[calimama]

Hi Anissa...

In response to your questions...

For those of you that ended up with facial issues post-surgery, did you have issues pre-surgery?
NO, NO WEAKNESS AT ALL. A RECOLLECTION OF SOME NUMBNESS ALONG MY JAW ONCE OR TWICE A YEAR BEFORE DIAGNOSIS.

Did you know before surgery that the tumor was affecting the trimenigal nerve and that temporary or permanent facial paralysis was expected?
I WAS TOLD THAT THE 7TH NERVE (FACIAL) WAS DISPLACED BY THE TUMOR. NOTHING ABOUT THE TRIG NERVE. I WAS TOLD BY ONE SURGEON (THE ONE I WENT WITH) THAT I HAD A 10-15% OF PERMANENT PALSY AND 25% OF TEMPORARY PARALYSIS/WEAKNESS. ANOTHER SURGEON TOLD ME I HAD 25-30% OF PERMANENT AND 50% FOR TEMPORARY. I HAD A MEDIUM TO LARGE TUMOR IN THE CPA.

Did you experience temporary paralysis?  How long before it was resolved?
I had full paralysis after surgery and pretty much no moment or much signs of life until around the 7 month mark. Have improved greatly since early January, but still a long way to go with eye not closing my biggest issue (now that a have some teeth/smile back). I am now 8+ months out.
Oh, and i had numbness on the face, teeth, gums for a few months, but no pain.  Now i still find my teeth and side of tongue feel a little numb, but nothing that i would complain seriously about.

Hope this helps. We all wish/wished for a crystal ball. I hope you can get the answers/comfort you need.

All the best,
Trish

[texsooner]

Hi Annisa...I'll chime in for your survey. My surgery was around 7 months ago to remove all but a sheath(attached to the facial nerve) of a 3.5 cm AN. I didn't lose sensation, but I had mild facial weakness for the first few weeks that made it challenging sometimes to drink with a glass(without dribbling) and brushing my teeth(without spitting toothpaste all over the place). Also couldn't whistle(not that big of deal to me).

Probably for me the worst part was a very irritating dry eye caused by my eyelid not closing tightly and no tear production. So I had to constantly(like every 20 minutes) put in eye drops to keep the eye lubricated. However, after about 3 months, things with the eye and face started to get much better. I only use eyedrops about 3 or 4 times per day now and I'd say my facial movement is getting very close to symmetry...to the point that nobody knows there's any difference except me.

I remember being very frustrated and impatient early on as my doctors told me that things would get better over time....I didn't believe them then....now I do. Overall, I'm very happy to be doing as well as I am. Hope this helps.

Patrick

[Keri]

Hi Anissa,
I'll chime in too.
Since I had translab, I really didn't expect the facial issues. But I had / have them as well. I'm almost 6 weeks post op. At first I think my face was all swollen and numb and the left side didn't move. It's gotten better. I still drool my drinks a bit, it takes forever to eat (but that's getting better), my 'smile' is sometimes looking at bit like Mona Lisa. The eye thing is a pain with eyelids that won't close, but that's getting a bit better too. I use Refresh lube and it really helps. My facial nerve wasn't damaged during surgery, and the tumor was sticky at first but they found a way to get it (excuse the total informality here!) My facial nerve, they say, was just going crazy during the surgery and twitching a lot. I guess now it is tired and sleeping. Although I don't see the improvement so much, I have people at church who see me weekly and analyze and comment on my progress! While this was a little embarrassing at first, I'm used to it now and try to give them a funny face  - they're trying to encourage me (and they are - they see improvement). My teenage daughter things it's most entertaining when my eye tries to blink, doesn't quite make it, and so the whites show. She says, "Mom can you make your eye roll back in your head?"

I was bothered more about the facial paralysis/weakness at first, but I've seen and heard stories here of how it does get better, it's just slow!

Keri

[nancyann]

Hi there Anissa,  getting facial paralysis for me was due to complete destruction of vestibular and facial nerves.  So I'm totally deaf in the right (AN) ear. & can't move the right side of my face.

However,  life is good at 53,  always good thoughts,  Nancy

[anissa]

Keri, I appreciate your informality, its the level of knowledge that I have so it totally makes sense.  I like the part about people from your church analyzing your progress, that is so endearing.    

Nancy, thanks for responding.  Life is good here at 39.    I love to hear the good attitudes here, it just gives me faith that should things happen I know I'll be fine because I'll be in good company, I'm just preparing my heart.  This is such a good conversation for me, keep it coming!

[nancyann]

Anissa:  I always say, "keep a peaceful heart"

[Kaybo]

*HIJACK*  *HIJACK*  *HIJACK*  *HIJACK*

You have such a great attitude NANCY and are always so encouraging - such a breath of fresh air to everyone!!  Thanks!!
Have a super day!

K

*OK, RESUME POSTING...*

[Syl]

Anissa:

Waiting for my surgery date to arrive was so hard. Although I chose surgery and not watch and wait, I felt like I was watching and waiting. My tumor was discoversed in Dec. '07, but my surgery wasn't until June of '08. I too was very worried about my face. But I just wanted to get the surgery over and done with, whatever the outcome. I knew what the risks were and just wanted to deal with them.

It breaks my heart when I see that some of us second guess our decisions after we can't take them back. That makes our recovery even harder. So in preparing your heart, understand what all the risks are so there are no surprises later. That's probably what leads to second guessing our decision--the lack of information before surgery. So research, research, and do some more research.

Keep up the good attitude.
Syl

[kenneth_k]

Hi Anissa.

I didn't have any facial issues before og immediately after surgery. However, 2 days after surgery I developed delayed onset facial palsy.
It took app. one month, before the smile was normal and eyebrow could move. My eye was dry for 3 months and is now ok.

But at 6 months, there is still issues. Bad taste (has been there since christmas), facial twitches, slight snarling and a dimple in the chin.

It may not sound encouraging, but for me these are only minor issues considering how I felt BEFORE surgery. I was a total wreck and didn't sleep at night. Could it be nerves? Maybe. Could it be the tumor fooling with the brain stem and interfering with my alert state? Maybe. I don't now.

But now I can sleep through the night and feel much more at ease. I would choose surgery again even though there will be side effects.

Hope you don't get to many of them. Just remember, you will be cured

Regards, Kenneth