facial paralysis

[Karen]

I had my surgery 5 years ago and have facial paralysis, dry eye , no feeling on that side, prizms in my glasses.  My husband says I talk to much about AN things.  Does any one else have that problem.. No one except you guys no what is like to have facial paralysis everyday.  It's hard not to think about it.  Do you think you ever get used to it?  I try not to dwell on it but sometimes you just get tired of all the drops, ointment, not being able to eat right, tallk right, look right!!!  And not be able to blink on your own.  I guess this is a bad day for me.  ANy one else?  Karen

[Jeanlea]

Karen,

It is hard not to notice facial paralysis when you have it.  Putting in ointment and gels all day can get to be annoying.  I find coming on this forum is a great outlet for my AN talk.  Our families can't really understand how much it affects us.  I have found that when I am busier I tend not to notice my paralysis and numbness.  I have to make a conscious effort to concentrate on all that we still can do.  I'm grateful that I can get through my days with no headaches.  I don't know how those that have them do it.  I am also happy that I don't have balance problems.  It makes doing my daily exercises do-able.  The exercise helps me in a couple of ways.  It gets me in better shape for physically and mentally. 

One adaptation I've made to drinking liquids is to hold the corner of my mouth.  When I'm eating I sort of scrape the corner of my mouth where food probably fell out and stuck to my face.  I can't feel it, but I know it's there.  I always have a napkin near me when I eat in public.  At home I sometimes wear the food on my face.  I tell my family I'm saving it for later.  Got to have a sense of humor. 

I hope that you have better days to come.  I am sending good thoughts into the universe for you.

Jean

[Jill Marie]

Hi Karen,  I had my surgery in 92 so I've been dealing with this for over 16 years now! Sometimes I think I've gotten use to it then a bad day or 1/2 a bad day comes along and I feel like you do today. As Jean says, keeping busy helps.  During the Holidays I complained a bit about having so much to do but now when I look back I realize that between the Holidays and shoveling a record amount of snow I had little time or energy to think about my eye  that doesn't water at all or how I can't smile like the rest of the world does.  I hate those commercial where the people are so glad they got their teeth fixed because having a good smile changed them so much.  Anyway, I don't talk much about having a tumor unless someone really inquires about my eye or face.  Sometimes I think I should talk more about it so I would have a better feel for how others see me.  Yes, I think about my issues all the time, how can you not when you have to put ointment or drops in your eye all the time. It seems that when I'm having a not so good day for some other reason my medical issues bother me more and of course when all is going well the medical issues don't bother me as much.  I'm sure that goes the same for most people.  Also, as Jean says I can't imagine having to deal with the headaches or balance issues.  Just as some on this board breath a sigh of relief that they don't have the facial issues.  I've been having headaches from over doing the snow shoveling which reminds me that I would hate to have the headaches.  I feel a lot better when I take a nice long walk or work out at the club, that I couldn't do with balance issues.

Then you get an email from your son stationed overseas that says he totaled his car and he and his girlfriend are very sore but will be ok!  That completely changes your day! All you can think about is them!

When the day is going well have fun and enjoy, when it's not going so well we're here!  Jill Marie

[jazzfunkanne]

hi karen , i am 2 years post op, and it is on my mind most of the time, i dont know if i was working it would take my mind off it, but like you i talk about it alot of the time esp to my hubby he just nods and agrees with me lol.

[Patti]

hi karen-i am 8 years post-op with all the same issues.  how can you forget about it with the constant eye issues, eating issues, balance issues, hearing issues, etc.?  this is the place where you will get understanding.  i don't contribute often because i am afraid to make the newly diagnosed more nervous.  they should have a site that only old-timers can access and we can all commiserate!  patti

[nancyann]

Hi Karen:  I'm 2 1/2 years post op, & as you can see you're not alone.   I think the eye issue is the worst - I'm still having surgeries, still using lubricant, eye patch at night,etc, etc.   It's funny, but I don't think about it much until I look in a mirror or the tears keep dropping on my cheek or my eye starts burning.  I don't talk about it with anyone but this forum (& of course the surgeon de jour).
I think we all have our good & bad days & that's what this forum is all about.  Just knowing I'm not alone with this really does help.
Take care,  always good thoughts,  Nancy
(ps:  I had the T3 surgery last year - my before/after pictures are under Facial Issues, topic:  Post Temporalis Tendon Transfer - this is the best surgery I had done for myself).

[epifania74]

I'm sorry to say I am in the same boat as you..It seems the only one that'll listen to me outside this site is my husband. But I think he can only take small doses..AN this and AN that. he..he...

I love coming on this site.  He is happy that I converse with other people on here that know excatly how I feel..and they do..I would not know what I would do without this site to vent and share on.  My self esteem took a battering with the facial palsy but its slowly getting better, so is the esteem. Its hard to share with people that don't know what facial palsy can do to you emotionally, but this site sure does help.

Well gotta go find my husband and talk his ear off he..he...Take care fellow ANer.

[cate4Him]

Hey, Karen

I can only join the others in a big DITTO...me too!!! I am 9 years post op. It seems like every minute of every day and every night for the past 9 years I have been conscience of my face, my eye(I’m told I sigh every time I put drops in my eye) , my inability to swallow and my inaccurate facial expressions!!! This AN seems to have added an unwanted element of stress into my already stressful life. There is no relief...you can't take a break from it ever. I think that’s what wears on me. It sounds like that is where you are at...at least for the moment.  The reality of our condition is literally and figuratively in our face. And in the face of those we are close to. I'm sure , in fact I know that my son, now 15, misses my smile. He told me that info about a year ago. I cried. I imagine it is hard for them to watch us struggle with the physical and emotional aspect of this. They probably miss the pre-surgery us just as much as we do…  I suppose if I had someone to listen to my woes they would get sick of it, I suppose they have their own...but we've got feelings to express...what’s a girl to do?? I know I am new here but this has been so helpful to me. The element of compassion and understanding is enormous and unbeatable....I think it was Michelle(mimoore) who said “We are a team and we are here for each other - through good times and bad.â€?  You are probably over it by now…but I hope you remember that you are not alone…we stand with you.

cate

[MAlegant]

Karen,
Though I don't deal with facial paralysis I do have issues from surgery that remind me every day of how much I've changed.   Pain and numbness plague me and although no one sees these things, they are constantly there for me.  I have some facial weakness as well but only I notice.  It's impossible not to think about these things and when I am really busy and distracted and can't think about them, I feel very blessed.  I exercise a lot and that helps.  I've also made an effort to do the things I love to do, as much as possible.  I don't really talk about this to anyone except my husband and the people here on this site.  I refuse to live my life under a blanket especially since I feel I've been given a second chance.  I know I will never be the same person I was before the surgery; I feel forever changed, physically and emotionally, and that's a lot to deal with.  But because of this forum, I know I am part of a community of compassionate people who do understand and when I need to, I vent.  You are so much more than a symmetrical smile--you are a strong and courageous person and you are loved.  Sorry to ramble, having a bad day myself.
Marci

[Jim Scott]

As a fellow AN patient who had a large tumor, surgery + radiation and benefits from a very good outcome (no serious issues) I stand in awe of those who unfortunately suffer with facial paralysis, headaches or any of the more debilitating issues that can sometimes plague AN patients, post-op (or sometimes even even post-radiation).  I have to wonder how well I would cope with any of these unrelenting issues on a daily basis.  Frankly, I prefer not to think about it but reading the messages from folks who suffer daily with facial or other issues, I submit that you folks are real heroes and an inspiration to others as you meet and, if not conquer, at least fight to a draw the post-op problems that are with you every day.  My figurative hat is off to you all.  You're in my prayers and again, for what it's worth, I offer you kudos on your strength of character, your fortitude and your uncompromisingly positive attitude.  So what if you occasionally have a temporary meltdown'?  You've earned it.  Human beings sometimes just need to vent, cry or scream, whichever works best, as you forge on with whatever obstacle you're dealing with.  That these forums are a source of solace for you is music to my one working ear.    God Bless You. 

Jim

[sgerrard]

I stand in awe of those who unfortunately suffer with facial paralysis, headaches or any of the more debilitating issues that can sometimes plague AN patients...
I submit that you folks are real heroes and an inspiration to others...
I offer you kudos on your strength of character, your fortitude and your uncompromisingly positive attitude...

I absolutely agree, Jim, and I am constantly amazed at how much grit they have. If we ever have an ANA softball game, I want them all on my team. 

Steve

[cin605]

Now.....that would be some game!

[han nah]

Hi Karen

I'm almost 2 years post op now. I know how you feel. I must admit that I'm finding myself talking (mainy to my husband) alot more and more about AN issues my daily struggles with my AN issues. I was complaining that much that the other day he even contacted my surgeon to say how worried he is about me - I guess that is coz I have only just started to complain - almost on a daily basis now!

As for the facial paralysis, unfortunately that is something that will be us for the rest of our lives. It affects your daily life - having to remember to have your eye drops with you everywhere you go and having them easily accessible to use. Waking up in the middle of the night having to put more gel in your eyes. I now would have to be one of the slowest eaters in the world! Me and my husband went for a burger yesterday and sure enough there I am still only half way through, 10 minutes after my husband has finished his - the poor thing eats as slow as he can and he has to sit there an try and entertain himself while Im still eating! Even choosing a seat in a resturant I always try and pick a seat where I'm not facing everyone, coz I am aware of the way I look when I eat - my eye twitches, I have to eat with my mouth almost open and sometimes have to stick my finger in my mouth to move the food around. Even when out with friends I have to be aware of the food Im ordering to ensure that I can manage to eat it - and am always trying to eat as fast as I can so I'm not still eating when everyone else is finished.

I have only just started to look at myself in photos and I still have my days when I am very aware of my paralysis. Even when passing someone in the hallway at work, I smile(try to aleast) and then always have that after thought 'I wonder what they were thinking of my half smile'. I was looking at some old school friends last night on Facebook and that upset me. The fact that I can't even give a smile - the easiest thing to do in the world, and I can't even do that, and I will never be able to that ever again, really really upsets me, just thinking of that brings tears to my eye (can't cry out of my bad eye, which in it's self makes me more upset too)!

Oh yeah - and that is just touching on the facial issues - I have not even started on the deaf issues and how that effects our daily life and routine!

Anyway just knowing that there are other people out there in the same boat makes make me feel like atleast I'm not an alien and I'm not alone. I hope it helps you too

[lori67]

And I thought I was the slowest eater!  Looks like we should eat out together - but we'd have to fight over who has to face the crowd!   

You're definitely not alone!

Lori

[Kaybo]

I will be the one to face the crowd!  My theory is that I am doing the best I can & the rest of the world can just deal with it!!

K