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

[anissa]

Surgery is forthcoming and at the moment I am obsessed about facial paralysis, its something new everyday.    
For those of you that ended up with facial issues post-surgery, did you have issues pre-surgery?
Did you know before surgery that the tumor was affecting the trimenigal nerve and that temporary or permanent facial paralysis was expected?
Did you experience temporary paralysis?  How long before it was resolved?
Who did not experience facial issues at all?

I guess what I'm rubbing the crystal ball for here is this.  My Dr. didn't mention anything about the facial nerve other than it would be saved.  Will I have temp facial probs?  If so, for how long?  Is it possible that I could have long term problems even though he's never indicated it?  I don't seem to have any tingling or numbness right now.   

[sgerrard]

I am not qualified to answer any of your questions, having neither the experience nor the training, so I will just offer the safe answer to all AN questions:

Maybe. 

Steve

[leapyrtwins]

Steve is absolutely right.  The answer is a very definite maybe.

I had retrosigmoid approach which is supposedly known for leaving patients with facial nerve issues, yet I was fortunate enough not to have any real issue.

I say real issue because my issue was only slight and it was very short term.  Basically in the first 24 hours post op the left side of my mouth didn't go were it normally did when I smiled.  The docs gave me a dose of steroids and that was the end of that.

But, that's my experience and others have had different experiences.  You just have to go with what God gives you and take it from there.

Facial nerves can, and do, regenerate but sometimes it's a long process.

Jan

[Jim Scott]

Anissa ~

I would guess that the possibility of facial paralysis is the number one concern for AN patients contemplating surgery or radiation.  I know it was for me, and, at that time (almost 3 years ago) my knowledge of acoustic neuromas was relatively limited.  However, despite the hefty size of my AN (4.5 cm), I had only tangential facial involvement prior to my diagnosis and almost none, afterward.  My neurosurgeon listened to my concerns and flew in an intraoperative neurophysiological monitoring specialist (I dare you to say that 3 times, fast) from Pittsburgh to monitor my facial nerve during surgery.  My neurosurgeon hollowed out the tumor ('de-bulked' down it to a size that could be radiated) and avoided disturbing the facial nerve.  Happily, I didn't experience any facial problems post-op, other than temporary double vision (72 hours) when I tried to read.  Subsequent (planned) FSR treatments (26 in all) did not damage the facial nervesl  Although the 'AN side' (left) of my face is imperceptibly less sensitive than my right, I was fortunate enough not to experience 'eye issues' or anything related to facial paralysis, other than a tiny 'numb' spot on the left side of my tongue (that I'm barely aware of) and the occasional 'dry eye' feeling ('scratchy') that is easily alleviated with OTC eye drops, which I almost never need. I have absolutely no trouble with sensitivity when I shave.  I feel the razor just fine and don't nick myself.  That's about it.  My smile is  98% symmetrical - although my wife (who has been looking at me for 39 years, now) claims she can see a difference from the left and right - but she also admits it's infinitesimal.

Because every individual is unique and so are our ANs, there really is no template or guaranteed way to know with any certainty exactly what the outcome of AN removal surgery will be.  I'm sure your doctor will do everything possible to avoid damaging your facial nerve but the reality is that he won't know for sure what he has to do until the AN is exposed and of course, with all the factors inherent in this very demanding microsurgery, the outcome simply cannot be guaranteed.  After selecting what I considered the best surgeon (30+ years of AN removal experience and a splendid reputation in his field) I left the eventual outcome of the surgery to God - and he showed great mercy to me, for which I'll always be grateful.  I hope and will pray for a similar outcome for you, Anissa.  Actually, I wish every AN patient could have an outcome like mine - and some do.  Let's pray you'll be one of those.     

Jim

[MAlegant]

The trigeminal nerve, which is the sensory nerve, would affect whether you experience numbness (among other things. )The facial nerve is the muscle nerve, and the one that causes paralysis.  Most facial paralysis or weakness is temporary but it can be a slow recovery.  I had very slight facial weakness immediately after surgery which is not really noticeable (at least that's what people tell me!).  I still have it but it is much better at 7+ months out.  I have lots of trigeminal issues but even they are slowly improving, and they were my only presenting symptoms so yes, they were there pre-op.
Best,
Marci

[arkansasfarmgirl]

I'm one of the 2% of cases where the facial nerve could not be saved.  They cut and grafted it to be able to get the whole tumor.  It's slow-healing and frustrating, but not as bad as I feared before surgery (I believe I used the word "freak" on here and got my butt spanked thoroughly!  ROFL).  I had zero facial weakness before, but I did have significant trigeminal involvement--the whole left side of my face was numb.  Since day 1 post-op though, all my sensation has been back.  I'd rather go back to being numb than paralyzed!!  LOL 

Vonda

[Kaybo]

Anissa~
Since I know that you have been to my blog, I figure that you have seen that my face is paralyzed (& I have no feeling on that side) but I will tell you what I tell everyone - I had my syrgery a LONG time ago and they have my incredible strides in medicine since then.  Some folks are still left with facial paralysis today but MOST is temporary.  It can be a VERY long process requiring much patience, but at least there is hope for eventually healing.  As Jim said, you just have to put the outcome in God's hands.  Even though it seems like a horrible thing, it is really not THAT bad - IT COULD BE SO MUCH WORSE!!  I always go for "Be prepared for the worst and hope for the best!"  Let's hope you have a wonderful recovery with NO paralysis!!

K 

[cindyj]

Hi Anissa,

I'm one that had temporary facial weakness after surgery.  I had NO facial issues prior to surgery on my AN side.  I woke up from surgery fine, but 30 hours or so after surgery, my right side started having issues.  The docs told me since I woke up w/ it fine, the weakness would be temporary.  Now at four months post-op, I have only a very slight lingering weakness.  Nothing anyone but me really notices.  As all have said, there is no way to know or predict what, if any, damage will be done to the facial nerve until the docs get in there.

I think you should try to be thinking as positively as possible.  Go into your surgery feeling confident in your treatment choice and in your doctor's ability...we will all certainly be cheering you on!

Cindy

[EJTampa]

I just had my surgery March 5th.  No facial issues pre or post surgery, but the doc said I may get some weakness with some swelling.  He sent me home with some steriods to take IF I notice any weakness, but that hasn't happened yet.
 
Ernie

[Kaybo]

Anissa~
I forgot to put whether or not I had issues BEFORE my surgery...I would say NO.  At least to the "weakness" part, I did not notice any of that.  I do remember that when Dave & I started dating (not the 1st few dates! ), I told him then that sometimes I got food on my chin and didn't really feel it so if he would tell me I would appreciate it.  Now I know that was when the tumor was putting more pressure on that 7th nerve.  We dated/were engaged for a year and then they found the tumor & I had surgery about a year and a half into our marriage.  That's all!

K   

[Kathy M]

Hi Anissa!

I had a 3+ AN "removed" in January and have never had any facial issues at all.  That was one of my biggest concerns, too.  During the appts with my surgeons, we talked a lot about what I did for living, my fears, and I also told them that I played clarinet in a community band and a clarinet ensemble (and what an important life it is).  We made the decision together that they would, if necessary, leave a small portion of the AN if it was attached to the facial nerve in order to preserve its function.  That's what they did, they are very confident that it will not be a problem down the road (and I am sure hoping they are correct), and I'm looking forward to playing later this spring and getting ready for concerts in the park this summer.

Everyone's experiences are so different, and I was told repeatedly by good folks here in this distinguished group, that most of the time, if there is facial weakness, it ends up being temporary.  My surgeons said the same thing. 

I did have facial tingling prior to surgery - from my left temple down to my upper chin.  My lips were tingly, too, just like I was almost out of the novacaine numbness following a filling.  You couldn't tell by looking at me, but I sure knew something was up.  AND, I don't have that sensation anymore at all.

Best of luck to you- I'll bet thinking of you!!

Kathy

[hruss]

Hi Anissa!

Here is my  story in brief!

I did not have any problems with my facial nerver before surgery. Now after surgery it has been for the past 4 months I experience problems - in short I can not move my AN side at all and the worst problems come from my eye - I cannot move the lid at all, so that was why I had my eye shut sewed for a month after the operation. Now it is open and even more, this is my second day at work!! So there is some improvement - even it is noticable to people who see me sporadically, rather than to me - since I see myself in the mirror at least three times for exercises!!

I know a person, though,who experienced problems caused by his facial nerve - after the surgery his problems were resolved! Thaat was one of the symptoms to put him the AN diagnosis. 

Although I do not believe this will be a problem in your case, judging from your tumour size. Important is also how stuck it is to the facial nerve, though - and this could be judged only when you have your head open.....

It is a tough and risky outcome from a surgery, I must admit! And you will never know for sure! I hope you will not have to experience the facial paralysis though!!
Good luck with your surgery!

Hrissy

[wendysig]

Hi Anissa,

It is impossible to say whether or not you'll have facial nerve dysfuncion.  Since you say that your tumor is on the small to medium side, it is very possible you won't.  A few things come into play with regard to your facial nerve.  If the tumor is not sticky, that increases the chance that your facial nerve will be fine.  The docs can't tell how sticky your tumor is until they get there.  If the tumor is involved with facial nerve (I.e. growing around it ) there is more of a chance of temporary facial nerve dysfunction.  My AN was 2 cm at the time of my surgery but not at all sticky.  I had a minor problem with my eye that the doc said he felt would resolve in about a month and he was right.  That and a minor balance problem, adn of course being SSD,  were my only problems.  I had BAHA surgery two months ago and still have minor balance problems, but they are much better than they were immediately post-op.  I hope you are at least as lucky as I was and even moreso.

Best wishes,
Wendy

[Cheryl R]

Hi Anissa,      You may have read my posts of having 3 tumors now due to NF2.      The first caused 3 1/2 mos of facial paralysis and was a sticky tumor.        The 2nd on the same side was a facial neuroma and had the nerve graft also with facial paralysis and not complete improvement.      The 3 rd on the other side was a nice surprise with no facial paralysis.                I have never had numbness or face pain so no trigeminal issues.                  Usually the dr doesn't know until gets in during the surgery what exactly the tumor is doing to one or more nerves.   
                                                       Cheryl R

[Pooter]

Anissa,

I'm with the bulk of the experience here who says that it's a definitive maybe about having facial weakness.  Personally, I had "weakness" following the removal surgery of my 3cm AN.  When I first got out of surgery, I couldn't move the AN side of my face at all.  Now, 10 months (has it REALLY been that long?), you couldn't tell by looking at me that I have any weakness at all.  There is still a very slight bit but every day brings a minutia of improvement.

To bring it in perspective, my doctor told me after the first couple of weeks that they wouldn't even consider saying any weakness was permanent until MAYBE a year without improvement.  Facial weakness is very slow to recover.  You will read on this forum about those that finally get noticeable improvement YEARS after surgery.

As has been said before, if you learn nothing else from this experience, you'll learn patience.  Most ailments we deal with are talked about in terms of days.. with facial weakness in particular, it's talked about in terms of months and years.

Regards,
Brian