ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: m4guzman on May 15, 2009, 08:44:22 am
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Hi
I had surgery 2 1/2 weeks ago. The doctors said that my facial nerve looked good and I think that when I was in
recovery that I was moving my face with no problems. 4 hours later. I could not move. The doctors are saying it is temporary. Has this happened to any one. When and how does it come back. I know I have to be patient but I just want to know. And by the way I am starting to feel good. I am walking about 1 mile a day. Have not pain at all. Just a little dizzy and my left eye has to to taped shut at night. But I really am starting to feel good.
Thanks
Marybeth
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Hi Marybeth, everyones facial recovery is different, my facial nerve got a bit of bruising , i have been doing facial exercies daily , i am seeing good improvments i am 2 and half years down the line , my AN was on the large side over 4.5cm.
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Marybeth, delayed facial paralysis typically resolves much faster and with a much better outcome than the immediate paralysis. It's very common after surgery for hemifacial spasm, which is the condition I had. See Predicting Facial Nerve Recovery here: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm#Move
It's good sign that you could move your face in the recovery room. I knew right away that I had facial paralysis.
People with HFS typically recover from the delayed paralysis within six weeks or so, but of course everyone is different.
Best wishes for a speedy recovery.
Sara
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Marybeth -
glad you are starting to feel good.
As jfanne said, facial nerves do regenerate. Unfortunately no one can give you a definite time frame as to when yours will.
So, although it's hard, have patience and come to the forum often for support.
Best,
Jan
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Hi, Marybeth! I was a delayed facial paralysis person - woke up just fine, but within hours of surgery, had the "temporary" paralysis. Mine was all but gone within 7-8 weeks. I never did any facial exercises. The worst part of it, for me, was the eye - eye drops every 20 minutes or so, etc. I tried to tape my eye shut, but it bothered me so much, I ended up just not doing it. The only lingering facial trouble I have now at 6 months post-op, is that I still bite my lip every once in awhile and when I'm tired, my speech gets a bit sloppy. Just enough for my husband to have something to continue to tease me about :D
Be patient as much as you can! It's great that you are out walking - keep it up!
Cindy
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Hi, Marybeth.
I'm 5 weeks and two days post-op. My facial nerve responded well in the OR, and I'm told I looked pretty normal that evening. But the next day in the ICU, you should have seen the doctors coming in one by one and saying, "Oh!" when they saw me. It was pretty comical. They told me that it would be six weeks to 2 years. I have noticed some improvement in the last week. I'll try to get another photo posted to compare with the one I posted on my SpaDay thread at 12 days. That one was horrifying to me. Then you can all laugh at my new hairdo!
Like you, I have had a very lucky outcome, no pain at all post-op, no balance issues. I don't use eye drops or eye gel any more, only did that for about a week or two at most. Like Cindy, I bite my lip when I try to eat a sandwich.
Hang in there. I almost lost my patience with it last night, but the numbness of my ear beat out the face, SSD, and tinnitus for most annoying. Competing symptoms . . .
Nancy
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I'm 3 1/2 months post op - my facial paralysis was very bad at first, but my mouth movement has gotten better. Now, my smile looks almost normal (but I still take a lousy picture, did pre op too!); my eye is still a bit problematic. It closers more now, sort of. The thing is, it waters (I get a tear rolling down my cheek almost every I eat, and it's not usually from my cooking). Since it's watering, I haven't been using drops/ gel / ointment as much. A million people have told me that facial nerve problems take time but do get better. I'm finding that true. My mouth on one side still feels like it's moving slowly, and when I'm tired my speech is a bit slurred. My eye requires more attention and help and care, but that's getting better too.
Keri
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Hi Marybeth! I had my surgery 7-1/2 weeks ago. When I woke up in the ICU, I had some facial function and then nothing. I still have nothing. I cannot close my eye. My doctor just keeps saying give it time and that it will come back. He gave me exercises to do when I feel a twitch. Still waiting for that twitch.
I am glad you are feeling better!
Tara
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One of the maddening things about AN's (and there are many) is that they can't seem to find a good time schedule and stick to it. When I was looking into my little problem I found the "average" ranges of almost all aspects of AN's and their treatments to be so broad as to be almost meaningless. Being only slightly left brained than Spock, this inability to chart or graph information to help with decision making was frustrating... at some point I learned to just embrace the freeform and go with my gut.
I too was one of those that woke up from the surgery with pretty much full facial function and then saw it completely disappear over the next few hours. About a week after discharge I was given a course of Prednisone (spelling?) and started regaining function after about 8 to 9 weeks. The doctor and I did have a pretty long discussion about the side effects of the steriods..they were worried it would cause facial hair growth, but as you can see from my avatar that didn't happen with me...still have that babyfaced smoothness like when I was 8.
Just a bit of residual bugginess at this point. The recovery process also seems to have very few instances where data points behave like data points are suppose to (bad data point...go sit in your time out corner) and group into a useful pattern.
It's good to hear that you are feeling good and your recovery seems to be progressing...congratulations.
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Thanks everyone for your reply. I do not know what I would do without this forum.
Everyone is different, and so is every operation so I guess I just have to be patient. I will
keep everyone posted.
Keri, thats for the laughs. It is important to have a good sence of humor during recovery.
Thanks
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The fact that you displayed movement post surgery usually means that your facial recovery prognosis is good.
Nerve regeneration can range from 3 months to 3 years. I strongly recommend that until movement returns that you avoid caffeine and alcohol as these interfere with the nervous system. Until the movement returns you may also want to avoid sleeping on the paralyzed side of the face.
Have faith and hang in there- recovery DOES happen.
DHM
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I hadn't heard anything about alcohol, caffeine, and not sleeping on the AN side. I'm doing all three!
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Oh Oh. I've been sleeping on my AN side. I also use a heating pad on that side for awhile in the evening. No idea if anything helps because nothing has started moving for me yet at 6 months. People say it is looking better, but I think the pictures I've taken all look alike. Month 1, Month 2, etc.
My facial nerve was kind of finicky during surgery and then they lost it at the end. The tumor was very sticky and stuck to the nerve. My doctors said it was intact and would just need time (more than I would like) to heal. I think healing just depends on how irritated the nerve gets during surgery. Once again, we each get our own story out of this experience. ANs are definitely NOT "one size fits all".
At first, I kind of convinced myself that nobody was leveling with me and that it was permanent. However, I have felt very encouraged by hearing several people on this forum get it back at varying times up to 3 years.
Samanatha
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Heat on the AN tumor affected side of the face is fine. However place the heat on top of your face- not the other way around.
DHM
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DHM -- That is the first I have heard of avoiding alcohol and caffine. If this is the case, I have some screaming to do. No one warned me of that. If this is how I wound up with synkinesis.... >:(
David
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This is no doubt a stupid question, but with facial paralysis, does your eye still blink? I know it can't close be closed voluntarily using the muscles, as for sleep, and thus the taping, but does the involuntary normal blinking reflex still happen?
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Not a stupid question at all. Unfortunately, the answer is no, involuntary blinking does not occur. This is in fact the most serious side effect of facial paralysis as serious vision problems can occur as a result of corneal dryness if we are not diligent in keeping our eyes properly lubricated with eye drops or ointments. There are all kinds of threads about this in the Eye Issues section of the forum.
Sara
This is no doubt a stupid question, but with facial paralysis, does your eye still blink? I know it can't close be closed voluntarily using the muscles, as for sleep, and thus the taping, but does the involuntary normal blinking reflex still happen?
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This is no doubt a stupid question, but with facial paralysis, does your eye still blink? I know it can't close be closed voluntarily using the muscles, as for sleep, and thus the taping, but does the involuntary normal blinking reflex still happen?
My blink reflex is still there and it tries to blink. It just doesn't make it all the way closed. I have to remember to make it blink.
Vonda
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My eye does not blink. And Yes i think that this is bad because I have to lube it up all the time. Hence I can not see out of that eye. This is having an effect on my balance. If I cover my eye, my head does not hurt as much and I balance alot better. I think this is making my recovery a lot longer.
Marybeth
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David~
I have never heard of this either...
K
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Along these same lines . . . I am frustrated that I cannot open my good eye when both eyes are closed. It just doesn't make sense to me that my good eye does not function independent of my AN eye. Anybody?
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my 'bad' eye just sits there open all the time and my 'good' eye is so tired all the time. the good eye feels like it's the bad eye, and vice versa. does that make any sense?
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Keri: that's exactly how I feel - I recently had my eyes checked for a new lens Rx - my 'good' eye has become worse than the AN eye - so new glasses it is.
The one silver lining I've found is that when I'm driving & I sneeze, the AN eye is still looking at the road (I laugh to myself every time it happens !).
Always good thoughts, Nancy
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My AN eye does not blink so I have to remember to close it frequently. When working on the computer it sometimes gets too dry when I get wrapped up in typing something and forget. Just recently I have started to be able to wear my soft contact lens again. It helps to protect my cornea, and I can put drops in a little less frequently. I have a weight implanted in my AN eyelid, and it is great help. I can close my eye, and keep it closed while sleeping.
Like NancyMc I also noticed that my good eye can not work independently of the AN eye (Other than blinking). I cannot close both eyes and only only the good one.
What I do to check periodically to check progress, which sounds kind of nutty, is I use my webcam to record myself opening and closing my eyes and then play it back.
Samantha
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David,
Yes caffeine and alcohol affect the nervous system.
Here is a book I recommend: Caffeine Blues (I am not promoting Amazon here- it just has a “look in side the book “ link I want to share.
http://www.amazon.com/Caffeine-Blues-Hidden-Dangers-Americas/dp/0446673919
When I drink too much coffee my face becomes hypertonic on my AN side. I have drunk caffeine most of my life… and I am have yet been able to be off it for than a couple of weeks. (Not including the months I actually did not drink any coffee recovering from the AN tumor surgery because it tasted SOOH awful due to the metallic taste from the facial nerve damage thing). I am down to 10oz max/ day (some days I have only 6 oz) of coffee but ideally I would like to be off ALL caffeine: tea and coffee. My facial nerve action and taste buds appeared to return simultaneously. Once I liked the taste of coffee - I started to drink it regularly again. This is when the synkenisis started in.
I hardly ever consume alcohol except on special occasions. Over the Christmas holidays I had a few bevies containing alcohol and my eye-lid function went into regression -each time I did. The face did too. I had to go back to using my stick on eye weight. I no longer touch alcohol AT ALL- and consequently seldom need the eye weight -now.
Here is a blurb on alcohol
http://www.oregoncounseling.org/ArticlesPapers/Documents/ETOHBIOFx.htm
My youngest child did a project on “the brain� in 3rd grade .She became very interested in this topic while I was away at surgery and flew with it researching once I returned home. (She also knew we could research together being that I too was keenly interested). She even creating a motor neuron out of play dough. Here is a link that she dug up from the University of Washington titled “neuroscience for kids�
http://faculty.washington.edu/chudler/alco.html
Quote from the above link
Effects of Alcohol on the Nervous System
As mentioned above, alcohol is a central nervous system depressant. It acts at many sites, including the reticular formation, spinal cord, cerebellum and cerebral cortex, and on many neurotransmitter systems. Alcohol is a very small molecule and is soluble in "lipid" and water solutions. Because of these properties, alcohol gets into the bloodstream very easily and also crosses the blood brain barrier. Some of the neurochemical effects of alcohol are:
Increased turnover of norepinephrine and dopamine
Decreased transmission in acetylcholine systems
Increased transmission in GABA systems
Increased production of beta-endorphin in the hypothalamus
http://faculty.washington.edu/chudler/caff.html
Quote from the above link
Caffeine enters the bloodstream through the stomach and small intestine and can have its effects as soon as 15 minutes after it is consumed. Once in the body, caffeine will stay around for hours: it takes about 6 hours for one half of the caffeine to be eliminated.
Caffeine belongs to the xanthine chemical group. Adenosine is a naturally occurring xanthine in the brain that is used as a neurotransmitter at some synapses. One effect of caffeine is to interfere with adenosine at multiple sites in the brain including the reticular formation.
I also noted that the synkenisis I had ALSO started around the time I started sleeping on the AN side. That is much weight and pressure to put on new regenerating nerve fibers … especially sleeping on one side for 8 hours. The nerve fibers in your face are as delicate as a butterfly wing…
I think if someone were recovering from Bells Palsy they would be best to avoid alcohol and caffeine... and to not put any pressure on the face.
These are the reviewers on the Natural Standard’s Board (integrative medicine)
Their “about us� link
http://www.naturalstandard.com/
(ie some credible reviewers with medical background)
I am aware that this is the research paper that discusses this topic of Bells Palsy and avoid these substances
http://www.naturalstandard.com/index-abstract.asp?create-abstract=/monographs/conditions/condition-bellspalsy.asp
I found this quote from the article in a Google search
“It is best to avoid caffeine and other stimulants, alcohol, and smoking. All of these place stress on the body that can lead to symptoms of Bell's palsy ...�
I want fellow AN’ers to learn from my mistakes- not repeat them. (Although I was never a smoker and only drank on speciAL occasions ... caffeine consumer however I have been since childhood which started with regular "afternoon tea" etc ... now living in the USA a coffee consumer too...)
Stay off caffeine (if you can) and alcohol... and sleep on your non-AN affected side (or on your back) unit full movement returns to your face.
We really need more research done on this facial nerve regeneration and "alcohol and caffeine consumption" relationship with synkenisis… In the mean time stick to only putting healthy and nutritious stuff into your system… instead of stimulants and depressants.
DHM
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Mary Beth,
You are bang on about your eye issue. You need to get an eye weight until the movement returns. I did not get one surgically implanted but got a stick on temporary one- that did the trick. Most days I no longer need the weight unless it is very arid or I am fatigued (sleep deprived)
This is the product that your ophthalmologist (or neuro ophthalmologist) can order for you...
Blink-eze stick on eye weight
http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdf
Once I got this little gizmo- my balance improved tenfold- simply because I could see better without having to put all that goop into my eye (which was blurring my vision)
Hang in there- you WILL get though this…
DHM
P.S. Was your eye blinking immediately after surgery?
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oops... i'm sitting here drinking my second cup of coffee as i read this info about caffeine...
nancy, that was funny what you said about driving and sneezing and keeping your eye open!! just don't hold your nose!
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Caffeine - so evil, yet so good...no way I can get through a morning, much less a day without my Coke. Never had heard it specifically causing problems, or delayed healing, as related to facial weakness, but I suppose that does make sense. I, however, can never seem to give it up - know it causes me other issues as well, but I'm weak in this regard...it's my only real vice, so I can't, ok, I choose not, to give it up ;) What else would I have with pizza, french fries and my chocolate fixes?
I bit my tongue and slurred more words this weekend than I have in quite a while - interesting that it may be due to so much caffeine intake...also had my first post-op migraine earlier in the week. Suppose that means things are really getting back to normal :P
Cindy
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I've been living with the no blink for 5 mnths now. Why didn't anyone tell me about blinkeze? My eye doc wants me to wait on getting gold or platinum weight put in. I'm not sure why. Does anyone know of any good reasons to wait? I'm so tired of not blinking. But on the positive side, I must be the odd ball (nothing new there) but my good eye will open when my AN eye is closed. It didn't at first but it did after the first month or so. Weird.
I'm going to the eye doc in a hour. I'm excited to ask him about the blinkeze. Thanks!
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Great research DHM - thanks Michelle ;D
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I just tried to get Blinkeze. Why would the Drs recommand this? They are sending it to my eye dr for a trail.
Thanks you!
I will let you know if it helps.
Marybeth
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I had my an sugery three months ago. the tumour was really stuck the facial nerve and the nerve took a real battering in the surgery (some tumour left behind though :( ). My paralysis worsened drastically about 1 week post op so my eye wouldn't close i couldn't smile, eat or talk properly. This lasted about two weeks and since then it's got better everyday, now it's not too noticeable and casues problems only when i'm tired really. I've drunk coffee and alcohol regulary since my op (half a bottle of wine on a sat night and 2-3 coffees a day)and it doesn't appear to have affected my progress at all. I have done facial exercises given to me by a speech therapist that have really helped - i whistled for the first time since my op last night :) I wouldn't worry too much about having a drink/caffeine. I wpuld imagine that the small doses most of us take aren't enough to significantly affect facial nerve recovery.
Keep positive!
Hannie x
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I'm just back from my six week follow-up with my neurosurgeon. I asked if caffeine, alcohol, or sleeping on the tumor side would slow facial nerve recovery. He said he didn't think they would. Rather, his experience is that being tired is the only cause for setback.
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then, i say (holding up my glass of wine) CHEERS!
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I believe that many doctors themselves became addicted to caffeine during med school and the long night shifts during internship. They will defend caffeine until the end…
I tell you – you got to read the book Caffeine Blues... the argument is very compelling and scientifically well backed up. (He even address doctors attitude on the subject. Many are defensive as they too are addicted to caffeine.)
I personally know that my doctors are not only caffeine consumers but one is an expert on Pinot Noir wines. (They are after all – “human� ;) )
I am trying to wean off caffeine... I won't even start on the fact I live in the midst of vineyard country... and the big long MAY weekend wine tasting festival have started today. Regardless- I am done with alcoholic bevies.
No I have read enough now to know that these DO affect the nervous system... My nervous system has been attacked enough - thanks...
I have nicked the wine ... but Peet's coffee is harder for me to do...
I think if you spoke with neuro-muscular facial retraining therapists- their opinions may differ from the neuro-surgeons.
There is still much for discussion ...and yes perhaps more research opportunity on this topic.
Daisy Head Mazy
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Hi DHM,
As soon a I wrote the 'cheers' thing (after i had hit 'send') I felt like it may have looked like i was taking the research you provided lightly. I appreciate what you posted. I guess I'm one of the addicted who doesn't want to give up coffee in the morning or occassional wine in the evening (to my credit, i gave up smoking, heavy drinking and a number of other things from my college days!) I know too much of either isn't a good thing, and in some cases, some of either may not be a good thing either. I just didn't want to offend you by saying the research you put out there for us to consider wasn't helpful or signigicant.
I'm kind of in the camp that cell phones may be a lot more harmful than we think (mine was plastered to my AN ear all the time before my hearing loss and subsequent AN removal). Many don't think that is an issue, and maybe it's not. I now talk less, use the speaker more and am a bit apprehensive when I've used my cell (or cordless) in my good ear too much. Anyway, at some point i just quit worrying about it because all kinds of things can be bad for us and I just quit dwelling on it.
However, you were making a specific point with alcohol / caffeine isn't good with facial weakness issues. It is a good point to consider.
Keri
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I agree. I have a suspicion that if my facial weakness were significant, he may have been a little more concerned about methods for improvement. I asked him if I am a II, and he said, "Yes, you are a II." with a smile on his face. We need encouragement wherever we can find it. I left the hospital at the level of III on the Brackman scale.
My mother suggested I take overdoses of B-12 to keep the black flies and mosquitoes at bay (It doesn't work, so don't do it for that reason.), but when I looked at the bottle, it stated nervous system health as a reason for taking it, so I'm staying on it until the bottle she gave me runs out.
I'm not addicted to caffeine, just enjoy the consumption of a nice coffee with whipped milk in the morning. The alcohol could be a problem, so I'm going to try to get it out of my life entirely, well, reduce its presence. I'm trying to get better about sleeping on my non tumor side.
At a consultation with my rheumatologist last year, I mentioned that I had to go off methotrexate because my former rheumatologist said that I was consuming too much alcohol (more than 4 oz per week). The new doctor said that "too much alcohol" to a doctor means more than the doctor drinks. If he/she consumes two alcoholic beverages per day then that is not too much; if he/she doesn't drink any alcohol, then one drink a week is too much. I had a good laugh.
Keri - Good for you to quit smoking! Bravo!
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So I had a "ToeNail Party" Thursday night and provided (& drank a few) adult beverages...funny thing is that after a few drinks when I was lying in bed that night, I thought that I had some MAJOR feelings in my AN side. After all these years...I actually think that the alcohol HELPED me have feelings!! :o
K ;D
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Not to be deliberately contrarian but I think one can over-analyze alleged potential health threats to the point of suffocation. Obviously, heavy consumption of alcohol, smoking and eating foods high in salt and/or sugar content is not something anyone would recommend. Caffeine consumption is likely not beneficial to our overall health, either, and I say this as a person who drinks copious amounts of coffee, every day of my life (wilth no ill effect) but would dissuade others from doing the same. While some things are patently risky, such as smoking, others are risky based on statistics and opinions of researchers and physicians, who we respect. However, I think one must account for our human uniqueness in the way our bodies deal with various substances. Some folks walk by a candy bar and gain 2 pounds, others eat junk food all the time and don't seem to gain weight. However, no sane person would recommend anyone make junk food a major part of their diet just because some people can eat it without any tangible, observable negative consequence to their health. My view is that while it's always good to have information on what may or may not be detrimental to our overall well-being, 'one size does not fit all' and we can stress over things that may later be 'proven' to be not as 'bad' for us as the researchers once proclaimed. Caffeine consumption (via drinking coffee) has been alternately condemned and approved, depending on the time period and source of the 'study' involved. This destroys the credibility of the likely very real studies on the subject and by now, most people probably don't pay much attention to warnings about the 'threat' of coffee consumption. Look at the success of Starbucks and fancy coffee drinks that even McDonald's now sells. There must be a market for all that coffee being brewed.
I'm not putting down research or endorsing a hedonistic lifestyle, just noting that everything we ingest is not necessarily fraught with danger to our health and that one man's meat may sometimes be another man's poison - or not. I also like Nancy Mc's doctor's observation that, in a doctor's opinion "too much" (of almost anything) is usually translated as more than the doctor uses. That kind of subjectivity is rampant in many areas of 'health' information and has to be taken into account when we're being told what is supposedly 'bad' for us. I believe that most Americans have been told, via over-hyped TV and magazine stories, about allegedly 'dangerous' foods, additives, etc that they now ignore most of the hype and go with what seems sensible to them. They are probably right.
Jim
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Scotty (AKA "Jim"),
I challenge you to go two whole weeks without coffee. ;D I bet you cannot do it... :)
DHM
BTW Scotty disclosed in another post that he drinks 10 cups/day of coffee. :o Beam us up Scotty... beam us up...
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Hi, I had my surgery 4yrs ago. I woke up fine, but about 10 days after my face drooped and my eye would not close. My dr. put me on steroids and it soon went away good luck