facial paralayzes

[nancyann]

Hey Ellis:  Don't feel bad about mentioning that FINALLY you're getting movement -  I am thrilled that you are getting movement back - it took what, 7-8 months ? more or less?   WAY TO GO !!!!!!!    Always good thoughts,  Nancy

[pattibobatti]

Hi Ellis,

The crows feet thing is Huge!!!  I am almost 2 years out and I just got that!  It is such a slow process and I know everyone is different.  I had my surg. jan 06 and you are doing great..  I had only a slight movement at your stage..... Now I have a full smille!!!!


It just takes time,
Patti

[1wareagle]

Patti,

Thanks! You said that you have a full smile now. Are you able to show your teeth when you smile? All I can do is a closed mouth smile. I can't wait to be able to have a FULL SMILE and show my teeth. Are you able to blink you eye? I practice every day but nothing yet!

Nancy,
      I am truly excited and blessed to finally be getting some movements but I remember reading other post when they would get some movements. I was happy for them but then I would get down because it wasn't me. The last thing I would want to do is get any one down but maybe it will give someone hope to know that it can come back . 

Hang in there,
Ellis

[marg]

I just had to share my good news .  Today for the first time I washed my hair without getting soap or water in my eye on the AN side   .  I still can't blink on the AN side but I have been able to (mostly) "close" it when I  concentrate - for the last couple months .  Today I could finally closed 'tight' enough to keep out the water.  I know that my AN family will realize what a exciting 'big deal' it is to me (the people at work I told today said 'oh... that's nice' ).  I know facial paralysis gets better at different rates but I was still starting to worry, because I had read that some of you were able to blink again after a couple of weeks.... and tomorrow it will be 4 months since my surgery.  We sure do all heal at different rates.
    Have a great night,
                Margaret

[nancyann]

Hi Margaret:  Isn't it funny how these 'little things' make us feel so good ?   I tend to hold my hands across my forehead, fingertips meeting in the middle, then lean back & as the water hits the front of my head &  run my hands backwards !!  The things we get use to doing.   Well, great news for you - no more red eye from the shower !!!  Continued healing my friend,  Nancy

[1wareagle]

GREAT NEWS Margaret!

Ellis

[marg]

Thanks Nancy and Ellis. 
Nancy, I did the 2 hand protect the eye thing too ...  my daughter suggested swim goggles but I told her it would make washing my hair harder that way.  All the little things we take for granted until we can't do them any more.

      Oh, I  just got back from my ENT's office and his resident asked me to raise my eyebrows.... of course only one raised .   It's just too bad I can't make it look more like the way Mr. Spock did it  . 

     The ENT said that the ablility to blink can be one of the last things to come back.... and offered a gold weight  if I wanted it...but I have been doing ok for the last 4 months - and I don't want any more surgery.... even a very small one.   
Margaret
       
     

[nancyann]

Margaret:  I can't close my eye totally no matter how hard I squeeze; but my optomologist said I have the Bell's phenomenon (I think that's what it's called - someone correct me if I'm wrong) - that's when you go to close your eye & the eyeball rolls upward so the cornea is protected.  I think my eyelid closes about 1/2 way when I squeeze hard & all you see is the white of the eyeball.  The doc told me to do this as often as I can as it helps bathe the cornea in my tears since my eye does produce tears but they're useless since I can't blink, they just roll down my face.   I can't wait to get the platinum weight.   I certainly understand your not wanting any more surgeries, & if you don't need it, why bother?  Always good thoughts,  Nancy
ps: I thought the same thing about the goggles in the shower; I remember Rita (Chris' mom) saying Chris uses them, but for guys their hair is shorter - wouldn't work for me either !
pss:  My neurologist said the same thing re: the eye area is the last area to get movement, if it does at all, especially the eyebrow area..

[1wareagle]

Nancy,
     
       I remember when you had the gold weight taken out but I thought you had gotten your new platinum weight put in. When are you scheduled to have the surgery?  I could not imagine being without mine. I know you have been having it rough and hope the wait is not to much longer.

Ellis

[nancyann]

Hey Ellis:  The new eye surgeon who'll be doing the platinum weight wants to wait until after I have facial reconstruction.  I have an appt. with Dr. Byrne at Johns Hopkins Oct. 3rd (I can't wait); after that initial appt. I'll know when the surgery will be.  I'm feeling ALOT happier since I'm getting closer to the time to have the face fixed.  I've been wearing the NitEye Bubble bandage every night & that really helps with increasing moisture to my eye since it doesn't blink at all unless I squeeze REALLY hard.

[1wareagle]

Nancy,

     Oct. 3 is not to long off but still a long time patching your eye to sleep each night. My weight closes my eye to sleep at night but what I would love to do is go to a night high school game. I would have to wear the clear patch to sit outside and I'm not up to the stares yet. During the day I can wear the special sunglasses I have but it's a different story at night. So I'm stuck in the house listening to the game on the radio tonight!

Good Luck,
Ellis

[nancyann]

Ellis:  I know what you mean - I've actually contemplated wearing the 'bubble' at work !! - the darn vanity stops me (I get the stares as it is with just wearing eyeglasses!).
I'm still pouring the lubricant into my eye every 2-3 hours while awake - my optomologist said that's what's kept my cornea doing so well !
ps:  Enjoy the game - hope your team wins !!

[1wareagle]

Nancy,

      Putting the drops in that often must be a bummer. Talking about the stares, I get enough of those from people trying to figure out what is on the back of my head. Ever now and then someone gets up the nerve to ask me what is that box on the back of your head for. When I tell them it a hearing device they just look puzzled. I had one person ask if it was some kind of new phone.  I know how they feel though, I have never seen one either till I got one.

Ellis

[nancyann]

I'm so use to putting in the lubricant it's 2nd nature (just did it a minute ago as a matter of fact).   I still don't have the nerve to get a hearing device.  I geuss if my good ear starts losing it, I'll look into it, but I'm okay with the SSD so far.

[marg]

My ENT today (at Oregon Health Sciences University .. OHSU) had not heard of the TransEar hearing devise.... nor had the hearing aid specialist there... I gave them information and after looking at it the hearing aid person told me it looked like a really good device and the ENT's resident said that he was going to research TransEar on the internet.  My husband said that the great thing about my Dr. appointment was that I got to  share about the new technology with a teaching hospitals hearing department.  Now I just need to find someone in this area that will fit a TransEar.
     My ENT was very understanding about my not wanting anymore surgery and when I told him a TransEar has a trial period ( if it doesn't work send it back no cost).... he encouraged me to try it.
     I also asked him if he had ever been on this forum... and he said yes.  I am glad !  I know of at least one doctor who treats AN patients ...willing to spend a little time 'listening' to us. 
     Nancy,  I'm so glad you have an option to help with your face.  I never thought I was a vain person but I feel very self concious now.... especially when I am up in front of my students.  After teaching for a while my face starts getting overstimulated ( I thing that is what is hapening) from all the talking I am doing and I start to trip over my words...especially the ones that start with an f,p, or b.     What am I going to do when I go back full time and have to talk all  day .  Ahhhhhhh
     Margaret