ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: nancyann on May 05, 2007, 05:25:27 am
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I've been on the roller coaster in my mind again re: my facial paralysis. I just read Eve (Tator's) response re: when to return to work. My hat goes off to you Eve for being able to get back in only 3 weeks !!! I was still a basket case at that point. I for one would like to know YOUR secret.
I've been having nightmares about demons for the past week, it is scaring the beejeesus out of me; I'm thinking is it may be due to my descent in thought over the paralysis? I do try to stay positive as I know I have options, I'm still on the 'healing path'. I don't know what's bringing on the 'bad thoughts' I get sometimes when at work, etc. I know my eye has been bothering me more since I don't hae a weight in. Any thoughts on full acceptance of your facial situation is greatly appreciated.
Nancy
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Morning Nancy
Hang in there, your're not by yourself on this matter. I think when you get your new eye weight you will feel better about yourself. If I can get up in front of my church and lead music with one side of my face dead, you can make it too. I know if you were not having so much trouble with your eye, things would be a little different. I also got back to work in 3 weeks. It wasn't easy but I had to push myself.
You can do it, hang in there!
Ellis
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Hey Nancy,
What timing. I was just reading my local newspaper online and there was an article about another person from my town who had a brain tumor removed 3 months before I did. I sort of know her and knew about it before my surgery. I looked up her brain tumor type. Ir was also benign. I was thinking that tumor might have been better. She has no real after-effects like a paralyzed face.
It is hard to deal with facial paralysis. It's rotten luck. But we do deal with it. There are good days and bad days. We do go on. This past Monday I was a speaker for a small group at a conference. Then I ended up calling out names for a raffle drawing in front of the whole group.
Thank you for saving me from heading down a bad path today. Just knowing that there are other people sharing the same problem with me helps.
On a lighter note... On my recent visit to my doctor he gave me back my most recent MRI films. I thought to myself, "What am I going to do with these?" I decided to give them to my students (fourth graders). They thought it was cool. I told them this proves your teacher has a brain. lol
Keep smiling on the inside, Nancy.
Jean
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Thanks guys. Geuss I'm just tired from it all.... Waking up several times during the night with my eye bothering me - I just need to be patient !!
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Hi Nancy,
I know what you mean about the nightmares. I go through phases myself. Things are good, and then all of the sudden some bad thought creeps into your mind and it starts to control all of your thoughts. I hate when that happens! :)
Anyway, try to keep telling yourself that you are healing. That things can only improve! Once in awhile I'll talk to someone I work with. They will point out all of the improvements that they have seen since my return to work. I guess I let all those things go unnoticed --- walking, driving, functioning as a whole person on a daily basis. They comment on the improvement of facial appearance; such as better tone or that they generally see a big difference. Its hard to see these improvements on your self. We see ourselves everyday. . .and if you're like me. . . each morning when you wake you hope to see your old self looking back at you in the mirror.
I think the old self is there! She's just taking her time . . . . slowly coming back to the reflection that you know. Hang in there. . . you are improving! And in case you didn't know it, your smile shines through your communications!
Take care,
Kathy
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Nancy i feel you on this one. I am only 8 months out but I have good days and bad days. Wish i had more good days. I am looking at the eye weight again as my eye isn't closing as good as it was. NOw it drives me more nuts than before. Plus i get sick of the coffee girl always starring at me weird when i start talking or smiling. Makes me feel bad. Hang in there Nancy! :D
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Hi guys, thanks for all the support.... I think I started feeling bad when a person at work was staring at me, & I mean STARING - she fell back onto the side of a chair - I ignored her (as I do all the people that stare while I'm at work), but I geuss it just got to me. Also, I've been thinking lately that my chances at another relationship are next to nil. What's funny is that normally this wouldn't even bother me (I've always been such a 'free spirit') but not having the option!! I told my best work buddy this today, & she just didn't get it, she meant well with the advice & support, but WE all know how people are. Once I accept this fact I know I'll feel better.......
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Nancy,
I recently had the experience of someone starring at me too. I was doing some promotional work and speaking to this couple when I noticed that the woman was only fixated on my mouth. It was hard to ignore her. I couldn't get over how rude I thought she was. Like I was the first person she'd ever seen with a disability!
Its very hard to muster up some confidence with these "facial issues" and then have someone pull you right back down. It can be very challenging! I guess we have to work not only on the confidence, but also on putting those types of people or situations right out of our minds.
Just wanted to tell you that I feel for you. . . .and continue to let your positive attitude take control! Like I said before, I can see your smile from across the miles! It shines through in all that you say.
Hugs,
Kathy
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NancyAnn, I totally understand. I am fortunate that I work out of my house on a computer and conference calls all day, no one to stare at me. However, when I venture out I find that I don't look at peoples face that much anymore when I am walking by them. The good news is folks remember me when I return to their establishment. Since my glasses have black tape over the left side people remember that and say - I remember you....Of course that means I must be on my best behavior! This situation has changed my basic personality. I have always been extremly outgoing but I find lately that I have no problem not talking and keeping a low profile.
As far as you finding a new relationship, from all the kind and encouraging notes you have shared, you seem like such a genuine, kind hearted, talented and beautiful lady, I am sure when the time is right you will find someone and they will understand and see your beauty!
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You guys are THE BEST !!!! You have my heart, my back, & my head !!!! The support is sooo much appreciated. I can see I'm not alone with this, THANK YOU ALL, Nancy
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Hello nancyann,
I just came across this thread.
I have talk to you in the past, about my facial look; I did not get to see my self in the mirror until the day I left the hospital; I was in shock to see my self. I looked like a chunk of clay that some one had just grabbed and pull the whole left side of my face down and inch. They took my gold piece out 7 months later. It was about 8 months since surgery that my facial nerves started coming back, with a lot of firing in my brain (nerve connecting).
The photo you see in the right hand corner was taken about 8 months ago. I am 2 years, 1 month, and 13 days since surgery. I was trying to smile for the camera but I was not able to. My son had installed the camera on my computer so I decided to put some make up on and see if it would make me feel better. In which it did. What you see the most is my right side of my face, it was my left side that was affected.
No, I cannot smile. I still have to drink out of a straw especially when I am tired, my mouth will just not form to the cup or glass. My eye will not blink, or cry. I've been to a few funerals and it bothers me for people to see one side of my face turn red and crying. I have single sided hearing. My ENT said it would be the last sense to come back; he gave me 40 % chance in it coming back after surgery. Every so often I still have to wear my patch like a pirate. Oh, and children in particular ask me why my mouth looks fun and right eye always blinks and the left doesn’t.
For my working it is a different story. I did go back to work, but I could only work for a couple of hours and when break or lunch break I would go to the lunchroom or my car and sleep, I would take an alarm to wake me up. When I am also tired my executive part of my brain quits functioning.
But I have found out if I work more than 3 to 5 hours with out a break I am wiped out. Totally!!! So I have decided to sign up for SSD with my doctors advise. And they say I might be receiving it, the neurologist they sent me too has advised it.
The long-term issue is what is bothering me right know.
There is so me others out there that have it bad and I feel silly in complaining.
eve
PS
I was er and I changed it to tator because my little 15 year old yorky had died about 3 weeks ago so I decided to call myself after him, Tator
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Hi Eve: yes, I know you as er - I'm sorry about your yorky, he/she had a good long 15 years.....
I know what you mean about 'wiped out' - I get to work at 7:30am, & by 2 pm I'm ready to 'go sleepy!' It does sound like you & I have exactly the same problems with the total facial paralysis. Did your gold weight have to come out (like mine) because of a reaction ? Are you going to have it replaced with platinum? I don't like wearing a patch because I end up with a red line across my forehead from the elastic band (vanity wins again). This past week I started taking Pilates to try & increase my energy, I've got to admit after only 2 classes I am feeling better, though I do still wipe out at work. I had started another post re: facial paralysis survey: I was mostly curious as to whether people's nerve was cut or stretched, causing the paralysis. I wish you all the best Eve, you've certainly been thru it.
Always good thoughts my friend, Nancy
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Hello Nancyann
I have admired your conversations, you always seem so happy and up beat.
I really don't Know what my doctor did to me during surgery I am sending off for all my records because I have plans on moving to Needville Texas and I want to make sure I have everything in case this thing comes back. My last MRI in Feb. stated tumour gone but a deformity in its place. Doctor say it is scare tissue but scare tissue growes and that is what I am afraid of.
All my ENT stated that it took a little longer to take out because instead of falling out like alot of other patients, mines had to be easily removed so not to do damage the nerve. It took them 6 hours to remove the tumor, the doctor said the tumor ( and he showed me with his hands, by making a fist with one hand and wrapping his hand around his fist.) had grabbed my brain and they had a little problem in taking it off , the process was done very slowly so not to damage the nerves.
No on the gold. I wear it around my neck sometimes to remind me of the experience.
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I hate when people stare!
What I really, really hate is that my expression is a little cranky and I am usually a person with a happy expression and big smile. That is gone forever now and its really, really hard to reconcile that I will never smile normally again.
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I just found this thread and as a 3 yr post op with facial paralysis I have run the gamut of emotions! Yes my face is recovering but I'm not me. I had my drivers license pic taken a few days before surgery and I often look at that smile! I'll be so sad when I have to get it retaken.
Things are still recovering. I remember the stares from strangers, I hated going out in the beginning. My self-esteem took such a big hit. Now that I'm somewhat normal, it is sad to think that people accept my weird face as normal. I'm told all the time that I look fine but these are from people who didn't really know me before.
It is a continual process accepting this new normal and knowing that I may still recover more makes it difficult as well. My best advice to those just starting on the facial paralysis road is hope and patience, two words I despise. ;) You have to look back to see the progress and it is hard.
I am glad for this forum where I can find people who truly understand what I'm going through......
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My husband took me out for Mexican food for Mothers Day. And the waitress couldn't stop staring at me. It really bothered me.
I'm sure grateful my husband and my family don't see what others see anymore.
eve
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When they stare at my daughter Meagan she tells them "I had a brain tumor". They don't know what to say and usually turn away with an "I'm sorry" or they just turn away. She tries to not let people staring get her down. She is back to work and going strong and is happy to be living her life again. :)
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MCLARKE,
I know what you mean. They do me the same way after asking what's wrong with my face. It really doesn't bother me anymore like it did. I'm alots more open to ask someone else what's wrong with them than I used to be. I thought if I asked it drawed attention to their problem. So I wouldn't ask. I met a women the other day whose face was just like mine. I walked up to her and asked her what happen to her. She told me when she was 5 yrs old she had spinal minneagious (?spelling) and was left with no movements in her face. She was so nice and acted like she was glad to tell me. I had rather them ask than just stare.
Ellis
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It is nice and supportive to see my mom on here. I also realize she is not doing work at work :) I work in sales so it is hard to sell the hotel i work for because i am very self conscience (sp?). I am very open about what i had because i think it is cool to have gone through all these hurdels and live to talk about it. I just wonder when is my face going back to normal?? I had my nerves stretched and we are going on month 6 and only small movement. I can't wait to get off the straws and drink from a normal cup.
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Who's your mom Meagan? If you're getting movement 6 months out - you'll probably keep seeing improvement - I LOVE TO HEAR THAT !!!! GREAT NEWS !!! Nancy
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Hi Meagan,
I'm nearly 21 months out and I'm still seeing some good progress. It takes a LONG time. My nerves must have been super-stretched. After awhile you will begin to lose some of the self-consciousness about your face. At least I did. Not totally, but enough to forget about it from time to time. I am a teacher so I'm in front of people every day. At least they are the same people which helps.
This is what I do so I don't need to use a straw to drink. I keep the cup nearer to the good side of my mouth and use my finger to hold up the bad side. I got tired of taking straws everywhere. If I drink very slowly I'm starting to be able to drink without even using my finger on the bad side.
Jean
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My mom is MClarke...i have tried to not use straws but the water goes all over me...maybe in time. My nerves were stretched to paper thin so i am sure it takes a while.
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I just discovered today that it is time for me to come to terms with my facial paralysis. I am 22 mos. out and my EMG
showed no improvement from the one I had at 6 mos. Though I have a strong signal below my lip, there is nothing in my
cheek which is why I have no lip turn up for a smile. I always hoped some morning I would wake up and have a little
corner of my mouth turn up ever so slightly. It seems so strange to never be able to smile at my kids but they seem fine
with the new me. I had a really good friend recently die of breast cancer and know how lucky I am to be here for my kids
and to only have had a benign tumor. My friend that died was the one who actually diagnosed my tumor and talked me
into having my symptoms checked out. My eight year old who comes to my rescue when he sees that I'm sad suggested
that I draw a smile and just tape it on. I guess I'm off to find a plastic surgeon. My MRI is on Wednesday. A small amount
of tumor was left on the facial nerve to preserve it so I'm hoping that there is no regrowth. Sometimes it's a day at a time. Sue
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Sue,
It's always hard to hear that our faces are not coming back to the way they were before. In time it will get better. The people that we love seem to be able to adapt to it better than we are. It sounds like many people here are doing well with the 7-12 procedure. Maybe that's something that will work for you.
Isn't it amazing that even though you can't smile your son can still tell when you are sad? Children can make you feel so much better. It's good to remember that you are still there for them.
Good luck with your MRI. Enjoy each day as you take it one day at a time.
Jean
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Woke up this morning, looked in the mirror, same facial paralysis. Today is my 1 year surgery anniversary & my life was changed forever. I'm feeling really upset as I sit here at work; I realize I should be grateful it 'wasn't worse' as people say, but I can't help feeling so sad.... I have the same EMG results as you Sue, nothing by the cheek area, just the chin. I have an appt. with a reconstructive surgeon July 13th - we'll see how it goes....
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Nancy, I'm sending big hugs your way. Hope you feel less upset soon.
Jean
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Nancy,
I kind of know how you feel. I'm coming up on my 6mts anniversary and still no movements. Everyday I hear of someone who is in worse shape than me. I know I am so lucky that it wasn't any worse than it was. Good luck with your appointment on July 13th.
Ellis
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I just past my anniversary of my AN and there is some small movement but no smile. When I try to smile it feels like I am smiling but when I look in the mirror it is just not there. People tell me I look better but I really can't see it. However, last Monday, I saw an eye specialist and she gave me prisms to place over my glasses to correct my double vision instead of that stupid black tape over my glasses. That made me happy. My surgery is scheduled for August to fix my eye. Once I have a normal eye I guess I need to look into some type of facial surgery that you guys are mentioning.
I want to say you all are beautiful even though we have never met. I am sure if I ever have the pleasure meeting you all, I will see your smile and your kind spirit. It lives within us! Stay positive and be strong.
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TP,
Was your facial nerve cut? Mine was intact after surgery even though I had no movement. I started getting back a very small amount of movement after 3 months. It was so small most people would not have noticed. At about a year I was like you. I could feel myself smiling, but it didn't show when I looked in a mirror. Eventually it did start to show. I'm at 21 months now and I have a little smile.
I never realized how much a problem a non-blinking eye could be. Happy to hear that you are making some progress in improving your vision. I'm putting in ointment every two hours. I say it's a pain, but I can't feel a thing. lol
Jean
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Nancyann, Yes those anniversary days are hard, especially the first one! >:( As they say it gets easier down the road. When I read your post I realized that I missed my anniversary last Friday, 15 years will do that. I know for sure that I didn't miss the first 5 anniversaries, after that I often thought about the day but it was often a couple days later, in other words, you begin not to focus so much on it as other things in life get your attention. I know you know you're lucky as you for one are able to work, not everyone can. However, today is your day and you have earned the right to be sad, mad & frustrated. :(
Sometimes when I read a post about someone's facial paralysis improving I am glad for them but reading the post makes me sad because I don't feel there will ever be a change considering how long it's been since my surgery and of course because the doctors have nothing new to tell me. Please keep in mind that I had a facial nerve tumor not an AN so my story is a bit different. Tonight I'm the one that gets to share a bit of good news, nothing big and I'm guessing nothing big will come from it but I just wanted to share it with all of you and with you Nancyann in particular because it's your anniversary and you're also the first one that posted to me when I first posted on this site. I'm going to tell my husband AFTERr I tell you guys as you will better understand what I have to say. Yesterday, I felt a small twinge on the left side of my face, I have felt a small twinge there before but only once or twice a year. Yesterday I felt one, then 2, then 3 then another one and ran to the bathroom at work in hopes of seeing the movement, I DID! I felt a couple more later that afternoon. I'm not counting on anything happening, like my eye watering again or being able to smile but it's just cool to feel something I haven't felt in years. I went to bed thinking that was probably it, then this afternoon it started again, this time it was more than a twinge, it was like the upper part of my cheek just below my eye from the bridge of my nose to my ear moved like a muscle contracting. It's done it 3 times since I started this post. Have no idea what it means but it's cool! What I'm trying to say is, don't loose HOPE, if I can feel something like this after 15 years who knows what all of you may experience, tomorrow or in the days to come. Don't let the fact that it took me 15 years to feel this discourage you, my tumor started growing before I started school so it was slow growing (removed when I was 35), guess my healing is the same. From what I've read AN's for the most part grow faster, hopefully the healing is faster as well. Good luck, Jill :)
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Thanks all for the kind words, feeling a little better today, I wasn't expecting to feel so sad yesterday, whew!, glad it's over. I'm praying you continue to show movement Jill, Jean (& all of us to start having movement).
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Hi Nancy,
You need a hug, my friend.
I hope you're feeling better today. Keep looking forward, don't look back. Stay positive and Hang in there. Facial paralysis seems to improve at a snails pace. You had a rough spot with the removal of the weight and dry eye. I realize the whole process seems to take so long. Chris went to the facial nerve center today and saw little movement since 3 weeks ago. He felt bad too but I reminded him that his doctor, who hasn't seen him in six months actually saw movement on Friday. It seems that one day you see movement and the next day you don't. I know this can be frustrating.
At the facial nerve center, we get hope. One thing that seems to help is actually seeing the biofeedback that we get when they put the electrodes on his face and actually watch the smallest undectable movements on the computer screen. It gives us all great hope. You can see graph-like results on the computer monitor long before they are visually seen on the face. You can tell that the nerve is slowly regenerating. You can also see how the exercises are helping.
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Wow! Alot of heartful thoughts. Although I'm just one week post surgery and experiencing the whole facial nerve recovery or lack thereof issue you folks have certainly given me lots of first hand info based upon your experiences. I think I contain a fair amount of vanity and this is and will continue to be a big deal for me most likely the rest of my life. This will be a significant lifetime adjustment. Hoping to be able to keep my head up when I feel like it, and to learn to acept stares as insignificant in the greater scheme of things. Thanks for the postes. I'm all in on this one!
God Bless! Neal
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Wow! Alot of heartful thoughts. Although I'm just one week post surgery and experiencing the whole facial nerve recovery or lack thereof issue you folks have certainly given me lots of first hand info based upon your experiences. I think I contain a fair amount of vanity and this is and will continue to be a big deal for me most likely the rest of my life. This will be a significant lifetime adjustment. Hoping to be able to keep my head up when I feel like it, and to learn to acept stares as insignificant in the greater scheme of things. Thanks for the postes. I'm all in on this one!
God Bless! Neal
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Hi Nancy,
I hope things are much better for you today. At only 6 weeks out from my surgery I feel thankful that I am seeing some small movement in my cheek and that I can drink from a cup without spilling too much (except if I forget and try to pucker my lips and the coffee squirts out all over my shirt .... which has happened a couple of times.... thank goodness only at home :D )
My left eye doesn't blink and it gets stared at more than my mouth (which doesn't look too bad if I don't try to smile). I had one friend ask me if I could see out of it and another friend - who is a nurse - say 'I keep looking at your right eye because I keep thinking you can't see out of the left one'. I don't know if I appreciate their comments or if it makes me more uncomfortable. Now I wonder if everyone thinks I can't see out of my left eye when they look at me.
Anyway, I'm glad I have AN family and we can be there for each other. Have a great July 4th.
Margaret
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I attended my 30th high school class reunion last night. The good news is most folks could not tell that I have anything wrong with my face. Some of them said my mouth does not move as much on the one side as it does on the other. No one said anything about my eye which is currently being corrected with a prism and has a gold weight in the lid. So, for someone who has facial paralysis and some pain associated with it, I was very happy that I looked normal to most of my old time friends.
This is a long road, one that the Dr didn't prepare me for but thanks to this forum I feel confident that I will continue to get better and my prayer is that I will totally be healed in the future! Now the not so good news is the music was way too loud and I had to wear an ear plug to stay in the room. I also found that I don't like being around a big group of people like I use too and I don't engage in a lot of conversation anymore. I found I had to turn my head constantly so I could hear what anyone was saying. Fortunately my friends were very kind and tried very hard to talk to my good ear but I probably missed half of all the juicy gossip! Which in the long run, probably is a good thing ;)
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This is an older thread, but I've been out of the forum for a little bit...but I wanted to say one thing...I freak people out constantly because I stare at their mouth and have for years, but it's because I'm reading lips to verify that what I'm hearing is correct. So if I ever meet you I'm not trying to be rude!!!! Also, it's interesting, the more I mention that I am deaf in one ear, the more I hear "I'm the same way" from others...So I plead...please make sure you're giving someone the benefit of the doubt and not discriminating against someone else who is disabled as well. At least when I talk you can see my face is crooked too so you know! ;D
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I know how frustrating the paralysis can be. I also have paralysis on my right side along with total loss of hearing in my right ear. Last year, I had a weight implanted in my eyelid as well as the outer corner of my eye sewn a little shut to help my eye to close. Of course it was only partially successful, my eye still does not shut all the way. Oh well, what can I do. It sure is a hard road to have to deal with all of this. I think shock is a major understatement when I found out I had a brain tumor the size of a golfball in my head. I went into surgery 3 weeks after having my 3rd child and had just turned 30. I couldn't for the life of me understand why this happened to me. I started to think of what I could've done to deserve this, but I had to accept that this was my deck of cards that I had been dealt and had to run with it. Its been almost 4 years since my surgery and I still struggle daily. I went back to work 2 months after my surgery, but luckily I work for family, so it wasn't too bad. The hardest part was feeling helpless when trying to take care of my newborn son. But its funny how life is. I heard this saying once that God gives the hardest challenges to the strongest people, but most times I don't feel strong at all. Most times I feel helpless & insecure. But I do have good days too, days when I'm su busy that I don't have time to think too much about everything wrong with me. I'm so thankful that I've found ANA, because now I can hav people to talk & relate to that are suffering from the same sruggles and how they cope with it all. Mahalo, Kim
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Hi Kim: Boy, some of your story sounds like me - back to work in 2 months, right sided facial paralysis, deaf right ear.... Well, I've decided NOT to go the nerve graft route (I'm more than 14 months post op, they say the sooner the better, though I've read some have had it 15 months out with good results), the thought of further nerve surgery scares me. I am going to be seeing a facial reconstruction/plastic surgeon named Dr. Patrick Byrne @ Johns Hopkins in October for an initial consultation & subsequent facial surgery so I at least look 'normal' at rest - will still have the paralysis.
I've always been extremely independent also, this AN hasn't changed that. You are strong Kim, just some days seem harder than others, I know that. But you know, we take it one day at a time. Always good thoughts, Nancy
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I pray for everyone on here, this is a tough journey but we are all making it together. Anyway I was wondering my facial parqalyzes is not drooping it looks more like Im snarling, does anyone have that?? ???
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Hi Linny, nice to meet you. No, I have the droop, not a snarl; but I'm wondering if it's due to your muscles contracting ? I'd check with your doc about this. there are massages you can do to relax the muscles. Is it painful?
And, be patient with the facial nerve regenerating - it's taken some on this board upwards of 2 years before they noticed improvements, but they do come, albeit slowly. Take care, Nancy
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Hi Linny,
I understand the snarl thing... I had AN surgery Jan 06. I have lots of recovery but at about a year out I had the right upper lip start to raise up. I thought is was from a nerve that did not grow back right or something... Very recently, I went to a doctor that explained it was from synkeniisis. He injected botox in my right cheek and a week later my lip was completly straight across. Besides looking better, it made drinking alot easier too!!
Maybe you have the same thing as me.....I sure hope the botox can help you too.
Patti
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Linny...snarl...know that well....I've been asked several times "I thought it was your right side that had the tumor" because the pull makes my left side look like the droopy one. It is the contortion of the muscles as the nerves regenerate, and I have some synkenisis as well. I massage my cheek a lot and constantly think "relax, muscles, relax", especially when I'm going to sleep or in bright sunlight. If it's really bothering you, talk to your doctor, I'm just going the DIY way because it doesn't bug me that much. I'm guessing if you put your thumb on the inside of your cheek and forefinger on the outside and massage around, you'll find some sore knots....work those out a bit and put a little heat on the area...that helps!
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Hey Kathleen,
I tried the massage thing and it actually made it worse!! But I never had any knots in my cheek.
I went to the doctor to see if there might be a surgery for my lips because it was getting harder to drink and eat. He surprised me when he said it was synkenisis. I still can't pucker on the right side, can you?
Patti
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Hi all,
What is synkenisis? I haven't heard of that before.
Thanks,
marg
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Hi Patti! Long time no talk! How's your girl? Gracie, right?
What messed my face up is that my dentist said I was grinding my teeth after surgery, so I should wear a mouth guard...so I did, and that's when the synkenisis started, as did the hypertonus. So I stopped with the mouth guard. The hypertonus has let up a bit, but still knots up sometimes, like now for some reason. I can't pucker properly, can't sip through a straw on that side, and can't whistle for my dog. I also have to watch how big a drink I take, if it's too much it squirts out of that side. Did the botox help at all for that??
Synkenisis in our issue is where the 7th, or facial nerve, is disturbed...for us from the microsurgery...and as it regenerates, the nerve pathways can cross. The 7th nerve is responsible for the facial muscles around your eye, mouth and cheek. So what can happen is that when you pucker, the muscles around your eye get the same message and they contract as well...closing your eye. Makes eating real fun, especially when you get a drippy eye like I have too. The way to really fix it is with botox, so the muscles around your eye stop moving and the information just gets to the muscles around your mouth. I just haven't taken that leap....yet...if ever.
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Hi Kathleen,
Gracie is just fine, a bit of a pill though! She heard a bird outside this summer singing a song and now she does that all the time....
My eye doesn't have any problems, I just had my upper lip kind of raise up. It is nice to not have that anymore. Do you just not like the idea of botox? My insurance paid for it, too.
Patti
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Hi Patti!
My doc and I were waiting a bit to see if would resolve itself...I didn't want to mess with it too much early on if it was going to fix itself. I've been thinking about it again though now that I'm 14 months out....so the botox didn't help at all with use of your lips? I'm at that point where I think I'm done...this is as good as it gets. It's not bad comparatively mind you, but it still can bug me especially when I never used to stain my shirts from eating, and now things just fall out sometimes. I think I've used more napkins in the last 14 months than I have in my 41 prior years.
My little parrotlet Fiona whistles to the outside birds, but the other two don't seem to notice them unless they're a dark shadow over the skylight. I'm not sure they know they're birds, I think they think they're feathered humans. We're just getting through the second molt of the year, messy time around the house, but now everyone looks so pretty!
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Hi Gennysmom,
I appreciate the info. about the synkenisis.... my facial paralysis is getting better around the mouth and cheek... but my top eyelid hasn't changed at all in the last 3 months. It still doesn't blink. I can make it close if I focus on it... but it doesn't do it on it's own. Is the eye the last to see (no pun intended) improvement? Thanks, marg
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I can only speak from my own experience...I had surgery in July, and by December my face had gotten better, then it went in twitch mode...what I noticed was that I'd have an area of my face that would twitch for a couple weeks then I'd notice a bit of improvement in that area. That's still going on, although it has plateau'd quite a bit. It seemed to switch back and fourth with a little improvement to my eye, then my mouth, then my eye and so on. By 3 months my eye closed, but I still don't feel like if I brushed against something it would stay closed...I'm very protective of it.
I also have to say that I'm sure that there's more that I could be doing to get it back to the way it was....but part of me likes the dysfunction in that it is like a scar....a visible feature of what I've gone through. I've always been one to think wrinkes and gray hair is earned and should be worn like a badge of honor. Of course I'm blonde naturally, you can't see the gray hair much yet, and my skin is young for my age...so that might change! ;D Also, I feel like trying to get back to the normal me before this thing is like swimming upstream...a battle I don't want to take...I'd rather turn around and run with the flow and accept the new me.
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Hey Gennysmom,
I know how you feel. Some days I just can't stand to look in the mirror and wonder what I can do to fix my face, but then there are other days (most days) when I'm very grateful to be alive and that I survived my surgery. I have 3 children who keep me going and when I'm with them, I can be myself and not feel insecure that my right side of my face doesn't move when I talk or laugh. I can laugh as hard as I want and it actually really helps me feel better. I swear, its true that laughter is the best medicine. I know that feeling of just going with the flow and accepting the cards you've been dealt. Its comforting to know that there are a lot of people going through the same thing I am and are experiencing the same feeling and emotions that I am. Its hard, but I have to believe that what doesn't kill us, makes us stronger. Without thoughts like that, I'd probably be living under a rock.
One day at a time.
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Mahalo Aloha808....You've got the right spirit for someone so young with this. There's nowhere to escape when it's your head that's constantly giving the signal "something's wrong with your head"...so I think all you can do is roll with it. And you're right, laughter is the best medicine....I feel my best when I can let everything go and laugh...especially when I'm with other ANers that "get" why I'm laughing, especially at myself when I've stumbled or something. I have to say though, I don't have any major functional issues which would probably drive me to fix them, so I might feel different then.
Yes, all those things keep me from 'neath the rock as well. Hope everybody has a great day!