Update

[Jeanlea]

Patti,

Working with the little kids is fun.  I was teaching kinders for the week before my surgery last year.  I decided to switch to an open third grade right before my surgery.  Didn't get to meet them until afterwards though.  When I went back to visit my kinders, they wanted to feel my face.  LOL  They felt it and then went on.  My favorite was when the Down's Syndrome child asked me why I didn't smile right.  :-)

Yes, my face is moving a bit more each day.  My eye still isn't blinking, but it closes fairly well when I want it to.  I get a lot of twitching there so I'm still hopeful that it may blink again.  Glad you can blink again.  Gives me hope that I will too.

Lisa, I know it doesn't seem like it but this time goes by quickly and you will be healing too.  Hopefully your face will improve.  Life goes on whether we like how we look or not.  When I was two months post-op my father-in-law died after having Parkinsons for over 20 years.  It gave me a different perspective.

Jean

[jacobs]

 Hi Lisa,I am just a couple of months ahead of you and have been back to work now for about 4 weeks.I know exactly what you are going through...I manage a busy toy store and am dealing constantly with parents,kids,sales reps and delivery people.Many new strangers every day.It was really hard at first as working in such a fun place I used to smile all the time! Now I find myself walking around with a neutral expression so as not to distort my face.I get asked almost every day what has happened.I am  straightforward with people and tell a quick story,I try to inject some humour as well as it often helps to soften things.
 I still feel like myself and though it's been said thousands of times,I am just grateful to be alive.As we get older,have kids things start to change,sag and stiifen anyway so I feel I have just started a little earlier.  ;)   I think dealing with these challenges just helps to strengthen us more.You will have bad days so it's easier to let them come,acknowledge  your feelings and let them pass.Little by little every day gets a bit easier.Hope tomorrow is a "good day" for you.
 p.s.I have a gold weight and while my eye still doesn't close all the way it has helped with the dryness.Lacrilube at night is all I need now and have given up the saran wrap patches.


                                                                                             Tracey

[cinnamon]

Tracey,

 What exactly do you say to those who ask. That is one of my concerns. Patients know that I have been on medical leave. I know they will ask. I can't just not tell them. So, tell me how you word it. I am so friendly I have to say something. I love to smile too. I feel I don't want to make any expression as to let others see that my face is so blank on the left side. I am really just hoping I can see some improvement in the next six weeks, until I go talk to my doctor more about the eye weight. I have been doing really well with my energy level and no balance issues so I just have to do my best to keep positive. My doctor just got me facing reality and I don't like it! I am stubborn. At least I can tell the truth.

  Thank you everyone for trying to help me. Again it would be so much easier working in a little cubicle. The good thing is I am trying and that is what counts right? I am working on the driving thing, putting on some makeup and taking baby steps revisiting the world outside.

Lisa

[pattibobatti]

Hi Cinnamon,

Stubborn is good.  I think I am too.  This is such a life change and I am constantly reminding myself that.  It's hard to make sense of all this but I keep trying. 

Would you like to talk on the phone?

Paattibobatti

[Captain Deb]

Here is my two cents, although some of you may not want to hear it! Move right on if you don't.  I think you all are VERY lucky to be able to go back to work at all! A busy toy store? I can't even go into a busy toy store and I'm almost 4 years out. That much stimulation makes my head feel like it's going to explode.  Maybe with a heavy dose of painkiller can I go into a store like that, or even a large mall. I go with my daughter-in-law who always has a stroller that I can hang onto.

At 2 years post-op, my headaches had me in bed 5 to 7 days a week. Only now and thousands of $ in medical bills later, am I able to work and it is about 1/8the speed and I pay dearly for it the next day usually.

I am a self-employed artist, disability? yeah, right--the self-employed usually can't collect that unless they are comatose.  It's a pittance anyway and barely would cover my health insurance, which I pay for out of my own pocket and it is lousy and it is expensive.

Pre-AN I was being "courted" by a nationally-know art gallery. To get in there would have meant a HUGE jump in sales and income. At their invitation I had one review, got turned down and told to get in touch in a year or so so they could see new work.  My brother is in this gallery (Oprah bought 3 of his pieces there) and he said that they turn everyone down first, but to continue to progress and I would surely get in next year. I got an AN instead. Last year I sold work out of my private collection, work I was saving to leave to my grand kids, to pay my medical bills. My husband has ad to not only put off his retirement by several years, but also has taken a second career as a landlord and spends all weekend, every weekend, doing remodelling on a house we bought to re-sell.  Our dreams of buying a big sailboat and sailing off into the sunset have sailed away by themselves.

The docs seem to think I have some kind of nerve disorder in my head and, short of an autopsy, likely they would never be able to really figure out what "mishealed" in my head.

However, my face is perfect! No dry eye, paralysis, droop, no nothing. It crosses my mind to think, "why me?" sometimes, and feel like I would gladly trade places with some people here to have facial paralysis and NO headache or pain. At least I would have my life back to "relative "normal. I have a great husband and family who would love me no matter what I looked like, and a career where I don't have to deal with the public at all.

I'm sorry if anyone feelings are hurt by me saying this, but this vent is truly needed as I missed the call last night due to a headache because I actually tried to paint a few hours yesterday. AAAARGH! (that is the Lucy frustration yell, not the Pirate one.)

You all know that I'm usually pretty cheerful and upbeat on this site, but I'm only human.

Capt Deb

[cinnamon]

Wow Captn Deb,

       I am sorry your headaches are that severe. My doctor scared the bejesus out of me telling me I would have horrible headaches, but I have had only 1 that was pretty bad. I think that someone always has things worse than you and it is hard to look at the postives. I have just been trying to be so strong that I finally broke. Yes we are only human. I think this an has changed all of our lives and we just have to move on but for some it is really hard. I have always had a pretty easy life and this was at the top of the mountain for me. Eventually I have to move on but until then I really appreciate all the support I can get. As it has been said, only those of us that have went through this understand. Our family can only try to feel what we feel. Thank you for sharing your feelings. I only hope that things get better for you.

Oh, pattibobatti,  thank you for listening. I may want to call you by I am okay right now. Thank you for caring. I am feeling pretty good since I got to drive around town some today. I will keep you in mind though.

Lisa

[Jeanlea]

I know it's hard when ANs cause changes in our lives that we weren't expecting.  Today I am thankful that all I have are face problems.  This afternoon I heard that the guy who fixes our cars after we hit deer and do other damage to them died.  (Being in a small town, everyone knows everyone else.)  He was not much older than me and has a son the same age as mine.  He was four-wheeling and was hit by a car from what I've heard.  The question came to my mind, "Why wasn't that me?"  I could just as easily have been hit by a car.  We never know when our time is up so we should be thankful for what we have.  Kind of like Oprah's gratitude journal. 

Just had to share my thoughts at the moment.  I'm still kind of in shock.  He was such a nice man.

Jean

[cinnamon]

I am sorry to hear he died. My family is quick to remind me that you never know when it is your time. It is hard when it is someone you know that passes. Well, even when you don't know them. I have been emotionally upset that Steve Irwin passed. I think about his wife and 2 children. It is a reminder that life is unexpected.

I am finding it hard when I look at magazines and famous people on tv. I think how can they look so good. They don't know what life is. Then again they could be hiding it. I am trying to just get a grip with things. It is slow for me.

Lisa

[amymeri]

Lisa

I have right sided paralysis and numbness.  I went back to work at 3 months and back full time seeing patients last month.  Most look but don't ask, and some ask.  I prefer when they ask and then I tell them the truth.  I just say "I had a brain tumor and the surgery to take it out caused the right side of my face to be paralyzed and it might take a year or so to get better".  Some leave it at that and some have questions.  But I prefer them to know WHY I look like this.

My job is hard because the paralysis makes some of my speech (M, B) hard to understand, and as the movement has returned I developed some hypertonus in my cheek so I have a mean sneer on my face all the time and can't close my mouth.  My eye closure is at 80% but no blink yet.  The dryness is better. 

My paralysis didn't start until 2 days post op which is supposed to have quicker healing, but I am 5 months out and have this hypertonus contractions that make movement harder (the muscle is contracted all the time in my cheek).

Lisa:  Its hard,  but it does get better.  Now it is mostly a huge drag and hard on my self esteem, but when I think back to how lousy I felt at 2 mos out and how good I feel now there is no comparison.  I agree with Cap'n Deb...being able to go to work, ride my horse, work in the  yard and have some fun is better than pain and balance problems.  Its a crappy trade off, but I guess I will take it.

The recovery of your facial function will be slow and in stages and requires more patience than you think  you have.  But you will get through it.  Just hang in there.

Amy

[cinnamon]

Thanks Amy,

I have to try to talk clearly because I feel like I slur. Do you have an eye weight? That is something I have to consider. I just wish I could wear a mask. Sorry this is really hard for me. I am trying to talk it out and make sense of things. I think if I wasn't so animated it would help. I like to show expression and this is a time when I don't want to show any. I just keep thinking I should have prepared for this more. Maybe I could have saved or planned to work from home. I am really weak with this type of problem. Well actually I am always hard on myself when things don't go right. I just keep telling myself things will get better. If only I worked in a place with no one around. You are brave. I only hope if I have to go back like this I will be strong like you. I am so bored being at home. My craziness of being at home will getto me I just know it. If only my doctors would have prepared me more. I know they didn't know what to expect especially with the tumor being all over the facial nerve. Sorry, I always beat myself up thinking about things. Thanks for caring. I wish I could fast forward time. I hope things  are better for us all one day.

Lisa

[Jeanlea]

Lisa,

The hardest part of going back to work with facial problems is during the weeks before you actually go.  I had the same thoughts before I went back to work.  I was really nervous.  Once I actually got there it was much better than I thought.  Looking back on it, I wonder why I was so worried.  Even though you can't use half of your face the other half still can express emotions.  They just look a little different.  I learned that with my students.  I could tell by looking at them that they could tell the emotion I was expressing.  Kids are great because they don't make up what they are feeling.  Even the adults treated me well.  It amazed  me when I was having a conversation with another adult and they treated me just like they did before my surgery. 

I can certainly understand that this is a difficult time.  Try to enjoy the time you have left at home.  Do things that make you happy.  Don't be afraid to leave the house.  The more you get out the easier it will be. 

I'm thinking of you and wishing you all the best.

Jean

[jacobs]

 Lisa,I agree with Jean and that once you are back in the swing of things at work it definitely gets easier.As far as what I say to people,it's different every time depending on how it has come up.One person said "you look like you had dental surgery" and I said "brain surgery actually" when he saw that I was comfortable talking  about it he asked me a few questions which I answered.Others say may I ask what has happened to you? I usually say that I had a brain tumor and surgery to remove it.It either goes further with people asking more questions or they then say something to exit the conversation.I think it helps my self confidence the more I talk about it as I know I was feeling quite insecure the first week or so back at work.I was afraid I would scare the kids in the store but they have been the least curious about my face and the most accepting.I also feel that being back at work has helped my energy level and am able to do alot more than I could even a month ago.
 We all deal with things differently and I know as situations arise you will just know the right thing to say.

                                                                                                          Tracey

[amymeri]

Hi Lisa

I don't have the eye weight although have considered it. I have a good Bell's reflex (where my eye rolls up when I try to close the lid) which offers good protection and I am very good about lubricating it.  But when I was about 2-3 months out I wanted the weight because I felt like I spent all day lubricating.  I mean, I would hear about people lubricating 4-5x a day and freak out because I could hardly go 15 minutes on a good day!  But right at the 3 mos mark I had my first hint (and I mean hint) of movement and my neuro-phthalmologist said he thought I should wait because I might have more blink at 6 months.  At that time I was ready to get the weight and didn't want to wait (despite dreading any procedures) but now I have days where I lubricate only a few times (more as the day goes on, evenings are the worst) and I only patch/tape at night. 

So, if there is a good chance your nerve will come back (and I think your good tone is a great sign) then you might want to wait.  I used a temporary, external weight for a couple weeks until I lost it!  It helped a bit.  (look up Blinkeze online.  Cost me $70). 

I found that for quality of life the blink/dry eye thing is the worst.  For self image the sneer is just awful...EXCEPT that since I can't eat without making a mess, and food doesn't taste all that great I HAVE LOST 20#.  Now granted, I would rather be chubby and smiling rathing than thin and sneering....but it is one tiny bright spot.

I went to a conference today...all strangers...and felt very, very self conscious.  And people did look (no one asked).  But I just keep on going. 

Amy

[matti]

Hi Lisa - I feel and know your pain. I agree with Jean, the hardest part are the days before you return to work. Constant worry and questions running through your mind, but trust me, once you are back, the focus wiill lessen. At first I stayed around the house and very hesitant to go out in public, but the best thing I did was to go out everyday and learn to become comfortable with myself. It helped prep me for going back to work. I co-owned a restaruant and worked very closely with the public, I was more aware of my facial paralysis than they were. No one judged me but myself. If asked, I told the truth, some were more interested than others.

What this whole AN journey has taught me, is patience. And I thought raising two boys would have taught me that, but oh no!

Keeping you in my prayers!
hugs,
Cheryl

[cinnamon]

Hey Amy, I am trying to find an eye doctor here that can offer me the blinkeze. I just called a couple of doctors today and no one knows what I am talking about. I believe I need the eye doctor to measure me for what size. I really don't want to have surgery but I have to wear this hideous eye patch all the time. I can't even go 15 minutes without wearing it. My eye does flinch a tiny bit like it wants to blink but it doesn't. I know I don't want to wear this patch to work. I am hating it at home even. Your eye just stays more moist than it used to? I am thinking that there is no sense doing a surgery if you have to take it back out. I just want to do something and the blinkeze sounds great.

I attended a brain tumor support group this evening so I had to stop calling offices but I will contiue tomorrow. I would like to hear more about it from you though if you don't mind.

I hope you are doing okay and thank you for sharing your information with me.

Lisa