coping with facial paralysis

[Karen]

How do others with facial paralysis        deal with it when you get sick and tired of it.  The numbness is what really gets to me some days I just want to give up and have it all go away.  The dry eye drives me crazy too, I am all the time putting something in my eye and wiping it out from under neath it.  Just need a place to vent I guess.  People seeem to accept me the way I am, but I still  can't accept it.  BadfBad day I guess.  Any suggestions?  Karen

[Jeanlea]

Hi Karen,

I have exactly the same problems.  I'd say it was a pain, but the facial numbness means no pain.  Ointment every two hours is no fun, and then it leaks out.  I do find that when I'm busy with things it seems more bearable.  We all have days like this.  Good days are ahead of you.  Sometimes just sharing our feelings with others help us feel better.
Just yesterday I was out on my dad's boat buzzing around Lake Michigan feeling pretty good that I was able to do that.  Things like that help me the most.
Hope you are feeling better by the time you read this.

Jean

[nancyann]

Hi Karen: Yesterday I sent you a personal message.  Like Jean, I understand how you're feeling. However, unlike Jean  I've pretty much become a recluse. I go to work, & that's about it.  I do grocery shopping early in the morning on weekends.  If I need to go to a store for something, I go on days I know it won't be so busy.  I eat my meals alone because of the way I look while chewing.  The eye issues are becoming unbearable without a gold weight.  Today I called the eye doc I was referred to to see if I could get a sooner appt. than 8/8.  I also emailed Dr. Patrick Byrne at Johns Hopkins for facial reconstruction - I've decided to go that route than the 7/12 or other types of nerve grafts.   I'm sick of the whole thing.  Yet, everyday I get up in the morning, thank God for all I have, & trudge along... this is NOT the life I want, but it's the life I'm living until I can get my face fixed.  I have no kids, no husband, etc.  I understand the 'bad day.'    Nancy

[Meagan]

Karen, i am sorry to hear you have been staying in more...i look normal when i don't talk so in crowds i am mum...Karen-i live in the chicago area and had my surgery at Loyola...where did you have yours at??

Not to sound depressing but would a doctor prescribe anti-depression medicine and what doctor would i see for that...i feel like all i do is go to the doctor so i may as well add one more thing.  My husband is really supportive and wonderful but he doesn't believe in pms so i don't know if he believes my depression...not many out there that "get it"

[TP]

Facial paralysis, stinks. People tell me I look fine but I know when I smile my eye closes up and my mouth turns up on only one side. There is pain associated with it and when you do talk a lot it seems to get worse. There are better days but it does stink. Unless one experiences it I find it is hard to explain the pain associated with this type of disability (of course no one calls this a disability). I had surgery a few weeks ago to correct my double vision. That brought me some happiness now I want my face to get better.

I've been hit hard with some other stressful things lately. I was starting to get depressed the last few weeks and was working long hours. I decided that I needed to start working out even harder and I must say that I feel better about myself which does help with depression. At karate tonight I decided not to wear my eye glasses and really work out hard. I came home tonight feeling pretty good. So, as a suggestion before you start any medication, make sure you are taking time for yourself and doing something special. If it is not exercise (which I highly recommend, I feel the whole process of buring calories and sweating seems to help) then make sure you are doing something specificially just for you.

Hang in there ladies, we are in this together and WE WILL GET BETTER!!

[nancyann]

Hey TP:  I love what you wrote - my problem is:  GETTING OFF THE COUCH - well, I'll be off it as soon as I finish writing to go to work, but at night - I know I need to push myself - - I am one bad couch potato !!   I think you & Jean have the right idea - GET OUT THERE !!!    Thanks,  will try the exercise routine when I get home - Lord know I have the videos, etc., just not the motivation (where did that go anyway)....   Nancy

[Dfcman]

oh yeah!  I started running a few weeks ago...I love it!  Def helps with getting out the aggression and the whole coping thing. 
 

[Jeanlea]

I know running is helping me.  Can't think about my face while I'm trying to breathe and run faster!  lol  My husband is running with me which is helping me get faster and keep going.  Today we set a new personal best for us.  We did 2 miles in 19 min. 47 sec.  We are running in a 3K race on September 1.  My only thought when running is, "I can't wait until I'm done."  lol  But it feels so good when I am done.

Jean

[aloha808]

Aloha Ladies,

I had surgery for my AN back in February 2004.  Only now after I've discovered this website have I realized that I'm not alone in my frustration.  I have facial paralysis on the whole right side of my face and total hearing loss in my right ear.  Its been quite a struggle to say the least.  Like I've read in all these responses, no matter how much people say "you still look great" or "I can hardly tell," the reality of being paralyzed & deaf is quite a rude awakening.  Although I have a wonderful support system through my husband, family & friends, no one really quite understands what I go through.  Like when people want to take your picture....yeah right!  Although the thought of dealing with this for the rest of my life seems unbearable, I try to look it like Jeanlea wrote...keeping busy & exercising is my biggest therapy.  Its when I stop and look too long in the mirror or when someone stares at me just a little too long, then reality kicks back in, but I guess we can't help that right. The thought of going back into surgery is the furthest thing from my mind, but if there are alternative options, I would love to try them.  Does anyone have any suggestions that they've tried (other than surgery)? 

[TP]

I've had a tough week. It seems since my surgery to correct my double vision my eye weight seems to be somehow affected. The  weight seems to be lowering my eye lid more so not sure if that weight is now too heavy or what and my face has been having more pain lately and more wierd sensations. I AM GETTING SICK OF THIS!

I too don't like my picture taken and I feel like my face is aging more. Of couse I am sure that is due to being 48 years old but it does seem the facial paralysis has some impact on the skin. I never had acne as a young person and it seems like now I have way more pimples at different times of the month and they seem to be more on the paralysis side of my face. I was blessed with nice skin but now I would not say that is a strong point of mine any longer. So again, not only do we have to deal with all this other stuff we have to deal with pimples and wrinkles too!

I say we all take a vote and say - ENOUGH IS ENOUGH! 

[nancyann]

Hey TP:  Wait a minute here - this may be good news!! - you're having weird sensations in your face, AND the weight is getting heavier ??  It may be that your nerve is coming back to life !!!---I HOPE - I HOPE!!!!   You know it's a slow go thing but this sounds like good news to me !!!!
I know what you mean about the face aging more - I'm 51 y.o. now & believe me, I look MUCH older - people use to tell me I looked younger than my age, but not since this surgery.  Physically I feel I've aged 10-20 years.   I don't have the skin problem you're having with regards to breakouts, but my skin does not look healthy - I saw the dermatologist yesterday & she is suggesting facials ( yeah - who can afford to keep that up - not with my impending surgery in the next month or two).
Oh, & the droop !!!!    not attractive on us over 40's - I think the older you are the worse it is because of the decrease in elastin in our faces.   UGH!!!
I've got to tell you - what keeps me going is knowing I have an appt. with the facial reconstruction surgeon Oct. 3rd - as long as I have SOME kind of plan I feel like I'm doing something....  I also have increased my use of visualization - seeing my nerve coming back to life, telling myself it IS returning, looking in the mirror & trying to 'upturn' the right side smile...etc.
Well,   keep on trucking TP, nothing gets done without a fight, & boy, are we fighters !!!

[pattibobatti]

Hi TP,

Sorry you had a bad week.  Enough is enough!! 

I don't know if you would be interested, but there is surgery to help you with your face.  Nancyann is having the same surgery that I had last Sept. My face does not hang lower on one side any longer, my eyes look much better and I look way younger!!!!

I had a facelift, brow lift and my eyes done.  Also had a facial sling put in.  And the best news is that after much tallking, our insurance co. is going to pay for it. 

Dr. Patrick Byrne in Maryland did the surgery.  Let me know if you want more info.

Pattibobatti

[nancyann]

Hey TP:   Maybe Dr. Byrne will have a 2 for 1 sale !!!!!   

[TP]

Patti/Nancy: are you saying there is a possibility that I can have a lift and my insurance may pay for it? Which Dr. recommended you see a plastic surgeon? I am suppose to have another MRI sometime this month. I will be visiting my neurosurgeon. He mentioned to me last year possibly Botox would be an option to help if my eye lid on my paralysis side of my face started to droop.  I would appreciate any info you can share, thanks so much!

[nancyann]

Hi TP:   Well, the insurance co. paying for it will more than likely be a fight - Patti is the trailblazer here - I will have a better chance since Patti's insurance paid for it - they then set a presidence to see this as not cosmetic but necessary.   I will need to work on my ins. (Cigna), seeing it the same way.   Johns Hopkins is out of network, so the least I'll have to pay is 30%.   No doctor recommended this - from googling facial paralysis I came up with other drs.' names,  then I saw Patti had gone to Dr. Byrne;  I looked him up & loved the before/after pictures.  I also spoke with Patti & she answered other questions I had.