ANA Discussion Forum
General Category => AN Issues => Topic started by: anissa on March 07, 2009, 10:56:23 pm
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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. ???
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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. ;D
Steve
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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
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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
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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
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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
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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 ;D
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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
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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
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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! :D), 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 ;D
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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
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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
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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
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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
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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
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I'll bet all these "definite maybe" answers make things as clear as mud, huh? :D
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
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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. ;D
Anissa
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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
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Yes, please, survey is still open!!!
Syl, I'm glad that everything worked out for you, thanks for sharing.
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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
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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
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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
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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
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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!
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Anissa: I always say, "keep a peaceful heart"
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*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...*
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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
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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