ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: hruss on September 05, 2008, 01:58:28 pm
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Hi all,
Today I had complete annual check-ups and it turned out that I am healthy! so far so good! BUT I am healthy in other than my AN aspect!
I had an appointment with my neurologist today and she explained to me that my AN was so big at first that during the time of its enlargement throughout the years it first put a lot of pressure on my facial nerve and then wrapped around it. That is why when they opened my head my docs did not go further than just taking some piece of my AN out; otherwise they had to severe my facial nerve!
Since I can't live with this lump in - it continues growing, I have my vertigo again, I am undergoing another surgery. And the expected outcome is to wake up with total facial paralysis!
So I have to ask all of you who suffer facial paralysis to explain to me what life is with it! Now I am so down and so upset!! :-[
But still I know that here on this board there are people who live with it. The first examples that come to my mind are my friends Kaybo and Debbie!
I thought about simple things like taking a shower when having your eye open - I tried it already so as to know what it is like and my eye went red because shampoo came in! How about taking walks? now i can wink all the way but sometimes when there is slight wind outside it gets blurry and red! so how do you cope with not having your cornea dried? i know this is bad, right? what are the consequences after keeping it dry for a longer time? How do you watch movies or use the computer or read books? Especially computers, they dry your eye even if it is healthy, right?
How about speaking when half of your mouth is not moving? how about chewing? with have some problems chewing on my right AN side and my dentist told me that I have put a lot of pressure on the left healthy jaw and if i continue chewing on this left side it will lead to have my jaw cracking!
These are the things that came to my mind at first. Probably there are even more complicated problems but I do not have experience in this situation! I just want to be prepared when I wake up after the surgery, it is really important what I will get and how I will deal with it!
So please share your experience!
Best
Hrissy
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Hey Hrissy. I'll take a stab at some of your questions. Bear in mind that I did not have an AN, I had a microvascular decompression for hemifacial spasm, but the facial paralysis outcome is exactly the same. My facial nerve didn't like being manipulated during the decompression surgery. It was probably stretched farther than it could handle.
First, the eye issue. Arm yourself with plenty of drops and ointment. My favorites are Refresh Liquigel drops and Refresh PM ointment. At first, I just slathered on the ointment and put on a pirate patch from the pharmacy. That keeps the cornea well-lubricated. Later on I still used the Refresh PM ointment but left the patch off during the day. My good eye compensated for the blurry vision and I found my overall vision was good enough even to drive. At night it is still important to wear the patch to protect the cornea from being bumped or scratched while you sleep.
I suggest going back for an eyelid weight implant as soon as you can after your AN surgery. It just makes life so much easier. I have a thin profile platinum weight. My ophthalmologist doesn't even use gold weights because of the risk of allergic reaction. He does not think the platinum chains are worth the added expense and thinks that tissue may grow up into the links making removal harder down the road.
When you take a shower you can put a layer of ointment in first and keep your back to the spray as much as possible. Once you get an eyelid weight that helps a lot. For walks, either wear a patch or get a pair of moisture chamber goggles. For sunglasses you can try www.7eye.com (check their clearance section). For clear lenses try Onion Goggles. You can order them from www.amazon.com. I understand you can also get motorcycle goggles from a Harley shop that serve the same purpose. They will have foam liners to keep the wind out.
Since you know you are going to have the facial nerve severed, you can have a 12-7 jump performed at the same time. That would give you the fastest recovery. As I understand it, you can expect movement to begin six to nine months after surgery, and can expect final results in the House Brackmann 2 - 3 range.
My speech was pretty bad immediately after surgery, but at three months post-op is at a level where nobody but me can tell a difference. Even my son's speech therapist says I am doing great. It feels funny to make the sounds "F" "B" and "P" but otherwise I'm getting along fine.
Eating was more difficult at first mostly because I could not open my mouth far enough to take a bite, but my mouth has relaxed enough to eat most things without a problem. If I need to, I just cut things into little bitty bites. I find drinking to be more of a problem than eating. I still use a straw most of the time, but I can drink out of a cup with a lot of concentration. Bottles are very difficult as I can't pucker right. At the gym I have to pour water into my mouth instead of drinking from the bottle.
I was completely unprepared to come out of surgery with facial paralysis and I was devastated. Now that I have lived with it for three months, I still don't like it but I've come to terms with it and accept the fact that I can do nothing but wait for the next year or so.
I guess my major recommendations are to find out if you can do a simultaneous nerve jump and schedule an eyelid implant as soon as possible.
Best wishes.
Sara
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Hrissy~
I am sorry that it was such a downer of a day for you! I wish that I was there to give you a great big HUG!!!! In a way, at least you know so that you can prepare, but it still really stinks! What is the saying "Hope for the best and prepare for the worst!" Maybe it will be different than they think when they get in there and you will be pleasantly surprised when you wake up! For me, I just really don't think about it much. This is the way I am and there is not a lot I can do about it so people either have to accept me like I am or not be my friend. Do I want to look like this? ABSOLUTELY NOT!! But I have to make the most of it. The main reason I did the T3 was so that my GIRLIES can have a family picture where I kind of look normal - not because I HAD to try to make my face look better - heck, half the time I never even get make-up on!! LOL!!! I think that Sara hit some good points. I would DEFINITELY reccommend an eye weight - take it from someone who didn't have one for 7 years - it makes ALL the difference in the world!! I just put stuff (used to Refrest PM before the weight and now Systane during the day & Refresh at night) in as soon as I can tell it is getting dry/red. My vision gets blurry - I have no feeling. Yes, I have had a lot of trouble but it has NOTHING to do with me caring for it this way - it is almost always an eyelash that grows inward & scratches it. I do not wear anything on it at night - it closes b/c of the weight. After a shower, i just goop it up , but again, the weight helps me to close it. I even swim underwater - I don't open my eyes, but I am sure water gets in...As for the chewing, it does take some time & effort to kind of retrain yourself to SLOW DOWN and concentrate so you don't chew your mouth up. Like Sara, I almost always use a straw, but I don't HAVE to anymore. Obviously, I ONLY chew on one side - it has been almost 13 years and my jaw hasn't cracked yet (knock on wood) - I guess I will cross that bridge when I get there! As Phyl always says, "day by day...inch by inch" (is that right phyl?). You can only do what you can do - you have the choice - you can be happy or sad in the shoes you wear, but you have to put something on every day!!
You know we will be here for you - it is not always easy, but it can be done!!
Love ya!!
K
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Hrissy -
Great advice from the others so far.
I'll just add that I had my tear ducts cauterized on my AN side. My doctor explained it as "if you want the water to stay in the sink, you have to plug the drain. If you want the water to stay in your eye, you have the plug that drain". It was worked very well for me. They also use silicone plugs, but we decided since I have dry eyes to begin with, the cauterization would be better. I don't use drops during the day at all, unless something gets in there, like an eyelash or dust or something. I use gel at night, but no patch. My eye will close most of the way - it just doesn't blink.
As far as the wind, I never leave home without my sunglasses. I guess I haven't been out walking in the wind in the dark yet, because I don't recall having a problem. The shower - well, for the first few weeks I used baby shampoo - the no tears kind, so when I got it in my eye, it didn't hurt. Then I got one of those hand held shower things - so I could direct the spray away from my eye. To wash the extra night time gel out, I just hold the lid closed while I aim the shower spray that way.
Eating can still be tough sometimes, but I do the same as Sara and Kay - just cut everything into small bites and go slow. I always keep a stash of straws with me, but I've figured out how to drink without one. Takes a bit more concentration, but makes me feel a little more normal - especially when I had to get a straw to drink my coffee with at Starbucks!
As far as the dental issues, I have had some problems with my bite and my teeth on my good side. There's just a lot of pressure on that one side now and I had TMJ to begin with, so I think that probably didn't help. I just make sure to be very careful about brushing/flossing/rinsing and going to the dentist regularly, so if there's a problem starting, we can catch it early.
I'll be having the 7-12 next month, and I realize I'll be back to ground zero for a little while, but at least I know what to expect this time around. I'll stock up on the straws and eye drops now!
And as you can see, none of these issues have kept us off the computer! Somehow, you just seem to find a way to deal with these things as they come your way.
Good luck!
Lori
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Lori~
I still drink out of a straw at Starbuck's - they just know to give me one (can we say too many Latte's <you know that is the Pick-a-Weenie's name, don't you?>). For me, the LIDS that they put on the coffee is what gives me trouble - but I really like having the lid on! There is another coffee shop here that I actually go to more often and their lids have these niffy little, sliding things that close - those are REALLY hard to drink from for me. I think it is because they are a bit thicker to accommodate the slidy thing!!
K
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Hello Hrissy. I had facial neuroma in 2006. I am a NF2er so this was one of my 3 ANs I have had. My surgeon is a neurologist at the Univ of Iowa which is in the midwest of the US.
He told me ahead that the nerve may be severed and they would then just go ahead and take some nerve from below my ear and graft in. This did have to be done. My recovery from my surgery was just like regular AN surgery as was a trans lab except had longer incision. I did have a CSF leak 2 weeks later but it was not due to the nerve graft but they had used a new product to help hold things in place and 3 people got leaks. They went back to the colloidal implant they had used previously. I was told it would be around 8 months to get improvement in the face and that was about it with continued improvement. I do not have complete movement but enough that look ok at rest. Yes I did have to put up with the facial paralysis. In fact this was my 2nd time as had some after my first AN surgery in 2001. Many people get gold weights but I never have as got along good enough with just keeping the eye lubricated. You do learn to cope with it. I have always chewed some on that side,it is just trickier. I was back to work in 2 months as a nurse and did fine. Many people here can give you their own version of what worked best for them. It is not something we like but we do manage to live with and I knew that it was supposed to improve in time and it did. I am 56 now so much older and think that makes a difference in coping with it. I would have done worse emotionally if this had happened when I was young.
Anyway asking whoever does your surgery if they know how to do this is important. My surgeon does around 60 AN surgeries a year and has for many years.
You have thru a great deal and hope all goes well for you in the end.
Cheryl R
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Sorry to hear about your issues, Hrissy. My paralysis is a little different. I do have some movement, but I also have synkinesis. But to address your concerns, eating and drinking have always been the biggest challenge -- especially drinking through a straw. For the first few months, my eye was a huge problem until I started getting movement in my lid. The sun is blinding -- especially in the winter when it's low on the horizon. To this day, I never go out without sunglasses. And I still use Systane drops daily. Initially, for about three months, I wore a black patch over my eye if I knew I was going to be away from home for any length of time. It's also taken awhile to learn to speak clearly and not like I had a mouthful of mush. But I've adapted. Of course, my biggest loss is my smile. That was my number one attribute -- my weapon. It's hard to be charming without it ;). But as my hero Kay says, you can only do what you can do and make the best of it like she has. She's my inspiration. If I ever get frustrated with what I'm dealing with, I think about what she's gone through for 20 some years. And if she says it can be done -- it can be done.
Best wishes
David
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Now David,
I've never even met you, but still think you're charming - full smile or not!
Lori
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Hi David , did i read you were a actor, would i have seen you in anything? my fav. is king of queens LOVED IT ESP ARTHUR LOL
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Ah pshaw, Lori. You brightened my morning.
And Jazzfunkanne -- yes, I am an actor -- or at least I was. My face is not cooperating at the moment. I'm mainly a commercial and print actor and Jack Nicholson's Stand In. But as far as seeing me -- I had a small part on Transformers playing "The President" on Air Force. I say "Kin I have a Ding-Dong, Lil darlin?" to the flight attendant. I played Paul Lowrey, the first murder victim on Woman's Murder Club, Ralph Buchanan (Sean Astin's dad) on an episode of Monk called "Mr Monk, At Your Service", played a minister trying to marry Reba's kids on Reba, played an immitation of Jack Hanna on Joey, played the Bank Manager in a movie called "The Girl Next Door", I was a doctor on an old soap called Sunset Beach and a bunch of other stuff on shows like Providence, Criminal Minds, Martial Law, Alias and SitComs that I don't even remember their names. They all tend to get jumbled together. It's an odd world. And while I was writing all that I started thinking maybe this break from it isn't so bad afterall.
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Just for the record, I think you're charming too, David ;D
I'm going to find our DVD of Transformers this afternoon and watch you. I didn't know you were the President!
Jan
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David~
I still haven't gotten to see Transformers, when I said you were the President, my friend immediately said your line!! You have a "one liner!!" :o Boy, you sure know how to make a girl feel good - my faith and my family & friends have certainly helped on this journey - especially Dave! I think that mostly I just don't have time to think about my face! HOWEVER, I have only dealt with this for almost 13 years - don't get me older than I am!! ;D I just told "Debrain Dallas" that if she does go to House that you would come visit her -- then I would be jealous b/c she would get to meet you and I still haven't!! ;)
Have a good day - it is BEAUTIFUL here and I am itching to get outside - we've been at volleyballl all day!!
K
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I didn't mention Transformers before? It was such as small part that I may not have. It's when one of the bad bots gets loose on Air Force One. I'm lying on the Presidential bed. You see more of my red socks than you do me. A funny story about that. Michael Bay was the director. He changes things and creates as he goes along -- a very bright but tempermental guy. Originally Wardrobe had me lying there in very traditional shoes and socks. Michael changes everything so that I am impersonating Bush -- to an extent. He tells Wardrobe to go out and get Cowboy Boots and a bunch of colored socks. They bring the socks back and Michael and I sat there on the bed going through them all to pick which ones looked the craziest. The red socks won. Then as I was laying on the bed, he choreographed my feet to move the way he wanted them to move. A very odd moment. There was a lot more footage shot to that scene -- originally it was supposed to be serious -- I had some other line. Then Michael changed it into a farce. It took two days to shoot that little snipet -- I think just about two years ago to the day. By the way, that scene was shot on a mock-up of Air Force One on an enormous sound stage in Playa del Rey that used to be the hanger where Howard Hughes built the Spruce Goose.
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Oh and sorry Kay. I know you were around 24 when you had your surgery -- I was thinking 24 years ago for some reason. Bad David.
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I remember Sunset Beach, shucks am I that old?
Anne Marie
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hi,
I am "happy" to weigh into this debate. Not that i am happy to have paralysis, but that some good can come it (helping others with information).
I agree with much that said been said by other posties here. My situation is slightly different because i have double vision (since surgery). I have been wearing an eye patch since leaving the hospital. The good thing about the patch (and there is not much) is that my eye is well protected from the elements, dust, flying whatever, my baby. I wear it pretty much all day long. I have a few too... now a nicer one (see my eye patch heaven post) but also some of the black drug store ones. I wear the black ones in the shower. This means i don't have to use baby shampoo (i have longish fine hair so nice to use good shampoo) and i have never had any trouble with water in the eye. I do make a point of keeping my head tilted back just in case, but the patch really helps.
I managed to read 2 novels and a lot of magazines the 3 months i was recovering at home, so while reading and computer work might not be fun with one eye, it is doable, and as with many things you adjust. I have never had a headache from this.
I too keep my AN affected eye well lubbed with drops and ointment. I was only using ointment at night but then my opthamoloigst said it's better than drops so good to use in the day too, if you can handle the blurriness - which i can since i keep it covered anyway. Really really important to keep that eye protected, lubbed up. While the paralysis may be temporary (trusting the graft works out for you) that eye is forever so take good care of it.
I tape my eye at night. I think there are some who frown on this practice, concerned that the eye will open and the tape will stick and damage the cornea. I use paper tape which is reasonably gentle to pull off (slowly, carefully) but hold well enough. I am always a bit paranoid that the eye will open with the tape, but have had the right eye many times in the night (i have an 18 month old) and the left eye has never popped open under the tape. I find it very secure. And i keep my eye open all day (except for manual closing from time to time to spread out moisture) so i really like to know that it is closed for the night. I gues your eye doctor will advise you on what to do at night. There seems to be many solutions.
I also had trouble eating and drinking in the early days, weeks. But things loosened up a lot and i am pretty good these days. I do chew mostly on the right side. I should work on using the left more. I can do it, easier with some foods than others, but it is a little tricky - amazing the things we take for granted! I can now drink well from a cup (and wine glass!), but still find bottles a little tricky.
I think once you get past the first few weeks, and early month or two, you get used to it, and adapt. It still has challenges, but so long as your eye is doing well (my opthamologist this week tells me my cornea is in great shape), the rest has been more of a social challenge. Family and friends are all supportive, understanding. I am not very concerned about strangers, but find it a bit harder to be back at work and have to explain to people what happened. I also found it tough to go to the park with my babe and meet other moms... most people won't ask what happened. Anyway, it does get easier over time.
I am 39 and find it hard after all these years of looking pretty good, to be as i am now. I see you are only 25, i think it would be harder to be younger and have to do with this, but you sound like you are getting prepared as best as you can and i am sure you will discover that time will sort things out and you will do great. I am sure the graft option will help a lot. Any with eye weights, plugs etc. there are means to deal with many of the issue. The first few weeks were the toughest, but at 3 months, I am doing ok and know that all i can do is wait. So i am happy and patient and taking one day at a time.
Good luck to you. It will be fine.
Trish
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Sara, Kay, Lori, David, Trish: you guys are amazing.
I don't know how you manage to do all these things, but your courage and good spirit is truly inspiring. More power to all of you.
Steve
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Steve~
It's really not that big of a deal or that we are some super people that deal better than others - for me it was either go on with life or hide in the back of my closet - I had to much to do to stay hidden (plus I might have gotten lost - my closet is always a wreck!!)!! ;D Thanks for your sweet words!
K
How is that knitting coming??? ???
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I agree with K, we just have to do what we have to do. I know my husband was happier yesterday that I agreed to go out to dinner than he was that my nose moved!
But thanks, Steve, for the compliment.
When I first started investigating my surgery (microvascular decompression for hemifacial spasm), the second surgeon I talked to, a young maverick eager to get his hands on my brain (in his own words), warned me that in his opinion the risk of facial paralysis should be a major factor in my decision. He said that women who take pride in their appearance take that harder than deafness (again his words). I dismissed his comments, because I truly did not believe it could happen to me. Now of course I see exactly what he meant. When I went in for my audiogram, I told the audiologist that I would rather have my face back than my hearing, she nodded in agreement. I think she had heard it before.
It's hard, and there are good days and bad days, but I am thankful that I am overall healthy, my hearing is bouncing back, I do not have balance problems or headaches, my family is very supportive, and I am now seeing some signs of facial improvement.
I think hrissy is wise to be preparing herself prior to surgery. I truly hope we have helped her, at least a little bit.
Sara
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I really want to write more but am so hard pressed for time today but had to let you know that I use swimming googles in the shower. They work FANTASTIC. They are clear and I put the strap way down in the back near my hairline so I can wash my hair well. Most recently I have been removing it at the end to wash my face and it feels so nice (I hold my eye closed). Anyway talk to you soon friends!
Michelle ;D
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Sorry, I am a little late weighing in - took the weekend off and am just getting caught up with everyone!
I can't add a whole lot to what others have said - we all go through most of the same frustrations and issues with facial paralysis.
Eye care is probably the most frustrating thing to me. It took me awhile to find the combination of drops and gels that works best for me (in my case, Refresh Celluvisc Sensitive and Refresh PM). I have found that my brain has adjusted for the constant bluriness in my right eye and most of the time, I am not all that aware of it. I read a lot and also do a lot of work on the computer; I do notice that I get more tired after a couple of hours on the computer now, but other than that, I am fine. I have the external eye weight (Blinkeze) which works fine for me and allow me to use far less drops during the day. Also, when I am wearing the Blinkeze I don't have to cover my eye at night, which is nice. When I don't have the Blinkeze on, I use a sleep mask, lined with Glad Press 'n' Seal (my favorite kitchen accessory!) and it forms a nice soft moisture chamber for my eye. I also use a lot of gel at night. My cornea is fine.
I enjoy being outdoors and had to be very careful for the first few months with expousure to sun and wind. Now, I never leave home without my oversized sunglasses! Also, i purchased a fashionable pair of the pink onion goggles (thanks again, Sara!) which I can use at night if I am outside.
Eating and drinking haven't been too bad. I can drink out of a cup or bottle as long as I am careful and don't take big gulps. I do have to cut food into small bites. And, things like pizza and sandwiches have to be cut into bites as well. If I try to eat a sandwich, I end up with part of my lower lip in my mouth, which isn't pretty!
My speech is fine, unless I get really tired. The P, B, F and M sounds still require a little concentration, but no one would probably notice. I did see a speech therapist a few times for some help with this. Tongue twisters are great - Peter Piper picked a peck of pickled peppers......
The emotional challenges of not looking the same can be trying. I still experience moments of feeling very insecure and self conscious, but far less now than at first. The worst thing, for me, is seeing pictures of myself. You can't let it define you, though. I am still the same loving wife, daughter, friend, and colleague as before - my smile just doesn't look as good.
I wish there was a way to make this road easier, but I think we all have to find our own way to do this. I will keep you in my prayers!
Debbi
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Debbi~
Very well written...
K
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Debbi
I agree with Kay. An excellent account.
And Steve, thank you for the kind words. I can only reinterate what Kay said, I don't consider myself some super person for dealing with it. You have a choice -- make the best of it or let it govern your life. It has certainly changed my life but I'm not going to let it ruin my life. And at least, I have some movement -- maybe the wrong movement -- but that is in the process of being corrected.
Best wishes to the rest of you who deal with it.
David
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hi all,
thank you for the long thread.
i talked to a doctor in Hannover, Germany clinic today and he told me that putting an eye wight is rather old fashioned. Instead they inject botox or sew the corners of the eye.
I wonder how "old fashioned" this technique for saving one's cornea is since in USA i have live examples of how well it works - according to your words it really relieved your eye.
Has anyone heard of the botox injections and sewing of the corners of the eye? How do they work?
Thank you,
Hrissy
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Further to my request, i would like to ask what synkenesis is. how do you develop it?
Hrissy
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my consultant told me the weight is the modern way of doing things, and says it doesnt look good if you get the eyes sewed together, synkenesis is cross wring of the facial nerves, eg. eating and your eye closes at the same time.
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Hrissy~
I just went to a ocu - plastic (eye/plastic) guy this afternoon. We are taking my weight out, letting it heal and then putting another in. My Dr. in Baltimore is definitely on the "cutting edge" of medical technology and he is the one that put this weight in so I don't think it is "old fashioned"!!
K
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It seems like the opinions on treatment of eye issues varies by country and by state!
My eye surgeon doesn't like to do eye weights as long as you have a good Bell's reflex - meaning your eyeball sortof rolls upward when you try to blink as a protective mechanism - keeps your cornea a little safer. If for some reason you don't have a good reflex, he uses them.
I have a good reflex and also have very thin skin on my eyelids, so he didn't think it would be a good idea for me to try the weights. Instead, I had a lateral tarsorrhaphy - where he put a few stitches in the outer corner of my eyelid. My AN eye was wider than the good eye right after my AN surgery and the tarsorrhaphy (that's a hard word to type!) helped to make them look more even. It also helped to be protect the cornea a bit. I also had my tear ducts cauterized to help hold the moisture that I was producing in my eye. You can't notice anything different about the eye with the stitches in it, it actually looks more normal now that it did when it was really wide! I have been very happy with it - I don't use drops during the day, so my vision is not blurry anymore and I only use the gel at night. I've seen some pictures of people who have had more of their eyelids stitched than I did and this does make that eye look a little different, but can also decrease your peripheral vision.
As far as the synkinesis - sometimes when the facial nerve comes back to life, it doesn't always rewire the way it used to - so the part that used to innervate your eyelid might now be wired to make your upper lip move - so when your brain tells your eye that you want to blink, your lip moves instead. When I try to blink, my cheek muscle tightens up and when I try to smile, my eyebrow moves ever so slightly. PT can help you work on these areas to re-train your brain and your face to do what you want it to do. Unfortunately, some of our brains and faces don't seem to care what we want and they just do their own thing anyway! :-\
Lori
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Hrissy -- I had botox injections one time for hemifacial spasm. It rendered me unable to blink for two months. Related to facial paralysis: botox can help with synkensis in the eye area, but I don't see how it could help you to blink. Just doesn't make sense.
My ophthalmologist said that he could stitch the corners of my eye, but he did not think it was a very good approach. I think it is a more old-fashioned approach than implants.
Unless my eye weight causes serious problems after my eyelid function returns (I am thinking positively here), I am leaving it in just in case my hemifacial spasm returns one day. In that case I would take botox injdections again because I am definitely not going to have another microvascular decompression. This one caused too many problems. And if the botox freezes my eyelid like it did last time, I'll have the implant to help me blink.
Can you get a second opinion?
Sara
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Hi All!! I don't post here very often but I just wanted to add to these posts.
Well I am a 10 year ANer. My surgery will be 10 years on 4/6/1999. I was misdiagnoised (sp?) for 13 years before I knew I had a AN. My AN was completely wrapped around my facial nerve and it left me with total facial paralysis. Although I knew this would probably happen, I felt after everything I read, that within a year it would return. However, it did not.
I have had the nerve transfer from the nerve from my leg and by 9 months I started getting movement. I then had the gold weight put in and a muscle tightened to lift my droopy mouth. I do have movement and my mouth is somewhat symetrical at rest. The nose fold on the good side is deeper then the bad side. This shows up a lot in pictures and needless to say I don't like pictures very much. I have a very small closed mouth smile (but it is more noticible in real life then in pictures).
I deal with the eye problems and chewwing problems etc like everyone else. But I have lived my life regardless of all these complications. I have always felt that I need to hold my head up high and not let this define who I am. This is not always an easy task though. It has it's moments of saddness :( but I have survived and I am still surviving.
I make sure I have a stylist hair style and color, always wear makeup and dress in style. I don't want to be defined as "poor Kim" but as "look at that lady" she looks like she must of been through a lot but she is still living her life the way she wants too.
Be who you are and hold your head up because I feel people will not look at you because of any facial issues but as a confident person.
Anyway, I am trying to bring myself up a little because I just came across some old pictures of me and it made me sad that I can't look like that anymore.
Thanks for listening everyone.
Kim
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Hey Kim~
I LOVE your attitude!! I have lived with facial paralysis now for 13 years and I try to do the same things as you - except many days I don't get make-up on. I am just too busy running after 3 girls!
I would LOVE to chat with you some time - send me a PM if you would like to!
K ;D
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Hi All!! I don't post here very often but I just wanted to add to these posts.
Be who you are and hold your head up because I feel people will not look at you because of any facial issues but as a confident person.
Anyway, I am trying to bring myself up a little because I just came across some old pictures of me and it made me sad that I can't look like that anymore.
Thanks for listening everyone.
Kim
In the interest of space, I decided to truncate your excellent post, but I want to commend you for your determination not to allow your facial paralysis to control your positive self-image or characterize you. Bravo! Kim....and thank you for posting your inspiring message. :)
Jim
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Hrissy, I don't know how I missed this 6 months ago ! I also have right sided facial paralysis since 6/19/2006.
Eye problems are THE WORST ! ! For the past 2 years & 8 months I exclusively used Refresh PM - a thick lubricant that
makes a 'shield' over your cornea. I also use NITEYE, The Dry Eye Comforter, a moisture chamber, every night while
I sleep.
I had the Temporalis Tendon Transfer, like Kay, it'll give a 'Mona Lisa' smile when you bite down on your teeth on the AN side,
& it pulled up the droop on my face.
This past February I had a pyrex tube implanted into the inner corner of my eye to drain the tear buildup I had (tears would just
roll down my face). The oculoplastic surgeon is trying to slowly wean me off the lubricant & onto Refresh Celluvisc so the pyrex tube
won't clog !
I hope things go well for you, always good thoughts, Nancy
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Kim,
You really did put into words a lot of what all of us feel. Some (like you) have paralysis, I have other issues, but the result is that I am not the same person I was before surgery and yes, sometimes that makes me really sad. I can do almost everything I did before, but not everything, and that is a harsh reality. Like you, I will not let this define me, but sometimes it does defeat me and I have a brief pity party. After that, life must go on. Sounds hokey, but there it is.
Best,
Marci
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Well, I am 5 years post surgery and thought this would be a good subject for me to comment on.
When I first had surgery (the first couple of years), this was devastating to me.
I was 40 at the time of my surgery and it really hit me hard since my tumor was 4 cm at its largest point and
the facial nerve was involved. I know I was concerned about it before the surgery but I think I was so focused on
just getting through the surgery that I wasn't prepared for the journey that followed.
Yes, I did have eye problems with dryness. Today, I am fine. I don't lube or use drops unless really needed which isn't too frequently.
I've been told that I should watch this since when menopause hits, dry eye could be an issue.
I can manuever a straw with no problems and have no problems chewing or drooling.
I would say overall, I've learned to accept my face. That is actually a miracle if you know me from past posts or do a search of my
comments. I don't feel the need to explain my face. I sometimes even forget that I look different.
I still don't like pictures but don't cringe when I see one.
I even got breast implants 3 weeks ago. So, I guess I am no longer concerned about drawing more attention to myself.
In addition, I did have botox for my forehead and restyline for the heavy line around my mouth which appears on one side after I sleep.
I think for me the eye opening moment of acceptance came when I was sittting in my surgeons office in Feb attending a facial training clinic where several
specialists assess your face to help find ways to improve it. THey handed me a mirror and asked me flat out "what would you like to change?".
I looked intently into the mirror and after a moment said "can you do anything about my lips that don't move in unison when I make certain formations
with my mouth when I speak. THey responed "no". I then looked again and said "I think I am good".
So for those of you who are struggling or new to this journey, be patient , your perceptions may change of the situation just as they have for me.
On a different note, I hope to get a chance to meet you at the symposium in Aug in my hometown. I've found this to be a wonderful support which has helped me along the way.
I still suffer from headaches but keep plugging along trying different things for relief.
Mary
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Debbi,
Just reading this post, as I just joined a couple of months ago.
How are you doing, and everyone else with facial paralysis?
I FINALLY posted my "gimpy faced" pictures, and am looking forward to some responses about what kind of surgery people think I should have!
I also get sad at times when I see pics of myself smiling. I have dimple on one side now. I was known for my smiley, dimply face. And I would smile when I was feeling cruddy.
I still trudge on, but the eye is always bothering me with the weight of the weight >:(
The oculoplastic surgeeon says that's good for me, it is protecting my cornea (which can easily be compromised). So whenever I read, basically one eye is closed.
Turns out I was born with poor eye reflexive mechanism. The doc could tell by how my other eye responds and from the surgery.So he has even threatened to partially stitch it shut if my eye starts acting up.
Talk about fear factor. I'm always putting in extra lubrication!
OK so life goes on but at a slower pace, and accepting my limitations. But life is good :)
Maureen
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Hrissy,
I am late to the party here, and others have already given you excellent advice, both on the practical management of eye issues, and the "how do you live with it" issues too.
I have had the paralysis for 9 years now. At first it was emotionally devastating. I opted for not having the nerve transplant, or whatever they call it. Even the best case scenarion of possible outcomes seemed like a case of "diminishing returns." I had a couple years of facial exercise training, which did help quite a bit just in terms of facial "posture" and maybe tone.
I did have an emergency tarasopphy (spelling?) a month after surgery, then later, a gold weight, which worked well at first, finally malfunctioned, and actually started eeking its way out. Eeek! did I say Eeek! It was quite frightening, and finally the eye doc pulled it the rest of the way out.
It turned out to be a blessing, because I had been persistently pestering the insurance company for a few years to approve the palpebral spring implant, which Dr. Robert Levine in Los Angeles does. Finally I got the spring, and it has improved my life tremendously. No more having to cover my eye at night. My eye actually closes now.
I think your biggest question was 'how do you live with it' which I take to mean 'how do you cope emotionally with it?'. Well, I eventually got used to it. I live a normal life, do fun things, and have a pretty rich life in many ways. At some point I stopped thinking about my face everyday and just started focusing on whatever else was going on...socially, work, etc...
Some of the other challenges of AN were bigger priorites, too, and that eventually took my mind off my looks. For example, I love being outdoors, and a walk outside each day is important to me. It was very important to get my balance back, which was done mostly by walking more each day, and getting back to my Tai chi clases. Being physically healthy and feeling happy by being in movement, is actually more satisfying than worrying about my looks.
Then there was the matter of work. I took the AN as a wake up call about our mortality, and decided it was time to transition back to being a therapist, after a few years of a more financially stable position as a social worker. That work just was not my calling, and I wanted to get back into the real work which I felt called to do, and leave my comfort zone.
So in my transitoning back to doing therapy, there was the matter of going on job interviews with a crooked face, to find a job to get fresh experience. It was necessary then to tell potential employers my story, so they wouldn't just wonder what was up with my face, and not hire me. Then there was some nervousness at first about new clients coming in, thinking they might somehow not think I was competent because of how I looked. But as it turns out, people are more concerned, of course, with their own problems, than what their helper looks like.
To make a long story shorter, my life in general is pretty normal and happy for the most part. The facial thing is mostly a soft 'background noise' which is heard mainly when I see pictures of myself, which gives me a temporary feeling of sadness. Yes, it would be great to have my big smile back, but I can still have a big hearty laugh even if it looks funny. Most people look funny when they laugh!
Kate
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Very nice post, Kate. thank you.
Sara
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I agree with Sara.
Very well said Kate!
Happy Easter!
Hugs Michelle ;D
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Sara and Michelle,
Gee, thanks!
Kate
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I don't have a choice!
Angie