facial paralayzes

[linny]

I thought I posted this but guess not. I have been out of hospital for A YEAR NOW, AND MY FACIAL Paralyzes is still bad. I was told 6 months to a yearr but  its not looking that way now they are talking botox. weird but if it works ok with me.  I seem to have a dreadful year with all this. First off I had 2 surgeries to remove a very big tumor on my left side.  I am tottaly deaf in left ear my left eye I can hardly see out, and it waters all the time when I eat. which is another ugly thing considering the left side looks froozen. my face is not drooping it looks like Im snarling. tighten up or something.  Has anyone had that??  I havent been back to work all year I am a letter carrier with a walking route and my balance is alful and my memory bad.  I feel extremly depressed over this whole thing as I know alot of you do to.  I just want my face back at least. I pray for all of us.    newbie....

[marg]

Hi Linny,
   I am so sorry that you have had a dreadful year.  I am only 3  1/2 months out and went back to work  1/2 time last week .  I am a 2nd grade teacher and the number of  changes I have to make to be able to do my job is  huge.  I had planned to go back full time after next week but I need more time.  My biggest problem is the SSD problem but I have some problems with facial paralysis ...my eye too (doesn't blink, waters a lot so it is hard to focus etc.)  but I have seen some improvement.  The balance issues are there for me as well... but I can manage in a classroom ...although tiring.  I can't imagine doing a walking postal route.... is there any chance they could give you a driving route or some other position in the U.S. mail department where you work?  I think it is harder to not be working.  It gave me way too much time to think about the issues I was battling.  At least at work there are some times that I can focus on other things.

  I wish I was there to give you a hug.  We are here for you.... and I will be praying for you to have the strength for each day (sometimes hour by hour) and that you will find a Dr. who can help you. 
     Margaret
    I

[linny]

thank you Marg so sweet you are.  I could not teach anyone my memory strays and  its just not like it used to be. 

[1wareagle]

Linny,

I am so sorry to hear of all the problems you are having. I am 8 mts pre op today. My face has not moved any till last week and I got a slight pulling from my cheek to my upper lip. I have to look in a mirror and concentrate to achieve a closed mouth smile. Dr. Brackmann had given me a 99% chance of getting movements back and I was about to give up. He told me that facial exercises would not help but I have done them anyway and it's paying off. Now if I could just get my eye to blink!!

Hang in there,
Ellis

[nancyann]

Hi Linny:  You DID post re: facial paralysis, & I responded, but for the life of me I can't find your post either !!   In any case,  I can relate to how you're feeling re: facial paralysis.   My nerve was cut, not stretched; nerves that were stretched seem to come back, but it can take upwards of 2 years !!   I still have no movement at more than 14 months post op.
I agree with Marg - maybe look into a driving route - even if it would be temporary.  Working gives me a sense of normalcy in my life, + it pays the bills.  Or maybe working at a desk job in the post office ?  See if your supervisor can work with you on this ?
I know a couple of people used the botox for the muscle contractions & it did work like a charm for them.   I have the droop, so I'm no help with this problem.
Hang in there Linny - we all have our up & down days, Lord knows.   Always good thoughts,    Nancy

ps:  I just found it:  you posted under the facial issues:  Coming to terms with your paralysis !!

[pattibobatti]

Hi  Ellis,

That is great news for you.  That is a long time to have to wait.  I felt the same way you did, thinking I will never get any movement at all because it had been 8 months and NOTHING.  I now have a full smile!! So, there is lots of recovery you can get!!!!

Do you have a gold weight?

Patti

[1wareagle]

Hi Patti,

Thanks! Now I feel like I might have a chance of recovery. You said you have a full smile, is this a closed mouth or a full smile with teeth? All I can do is a closed mouth smile and then its still not completely straight. Do you have the eye issues. I asked my wife to look at me just now and see if I am closing my eye. She said it was half shut. I don't know if it is the weight in my lid are if its starting to get better too. I can't wait to be able to go to a night high school football game without wearing a patch. During the day I have some sunglasses that have moisture chambers in them so I don't look so weird but at night all I have is the ugly patch if I go out.

Take care,
Ellis

[pattibobatti]

Hi Linny,

I think I did respond to your post on another thread.  I just hate it when someone says how bad of a time they are having.  I wish we did not have to go through all this.  But there is plenty of hope.  I can't believe it , but I'm going on 2 years.  The first year was very hard for me.  But now, I feel and look much different.  Things do get better.  Sometimes, it was such an uphill battle, but having this brain tumor just takes so long to recover from..... I always thought that when I started seeing my face improve and I started feeling like a person again that -'this was it'- as far as how far I might recover.  I think I am STILL recovering......

I had all the phases from pathetic looks from strangers, to right now where I can walk into a room and have a converstation with someone and I don't think they can tell I had all this happened to me.  If you are willing to give it all the time it needs, you might be very surprised....


Hi Ellis,


I am very happy to tell you that a year ago I could barely smile-closed mouth.  Now, I smile just like I used to!!!! Ok.  maybe not exaclty, but NOBODY

[aloha808]

Hey Ellis,

I have the same problem with my eye.  It doesn't close all the way, and so I have to apply eye drops and eye ointment daily.  The eye ointment works best for lubrication, but you'll find yourself wirping around your eyes wuite often because the ointment tends to get around that area and the day goes by.  I had a platinum weight put into my eyelid and also had the outside corner of my eye sewn shut a little(I didn't want to do the sewing part, but the opthalmologist insisted).  It helped, but my eye still doesn't shut all the way.  If you haven't tried an ointment yet, the one that I've found to be the most comfortable is Lacri-Lube.  You can get it from Wal Mart.  The only other thing is that the ointment will make your vision quite blurry in that eye, but I've become very accustomed to dealing with it.  The eyedrops would just build up a puddle of liquid in the bottom of my eye, which was more uncomfortable than the ointment.  Hang in there and know that we're all in this together!   

[aloha808]

Hey Linny,

I'm right there with you on wanting my face back.  I used to keep my head high, look peoplle straight in their eye and smile at just about everyone I ever came across, and now that not possible.  Its quite frustrating and depressing to say the least.  My doctor also told me that I was probably gonna get my hearing back and that my face should come back to normal, but it never did.  After a year went by, I pretty much gave up hope.  My surgery was over 3 years ago and I'm still struggling with it.  I'm fortunate that I don't have any balance problems or pains, but the paralysis and deafness is a lot to handle when raising 3 kids and working full time (my husband is a greawt support too).  I went back to work full time a month and half after my surgery.  Luckily I work for a small family business and don't really have to deal with too many people on a face to face basis, but I'm still out there.  Don't worry, things will get better, it just takes time.  I know having to accept the paralysis is really hard, so just hang in there.  I hope you're able to go back to work soon and get your mind off it all.  Any distraction helps.  Have your doctors told you why botox would be a good idea?  I don't know too much about botox, but I'm trying to figure out how that helps out situation. 

Keep your hopes up and be strong!

[1wareagle]

Hi aloha808,

Thanks for the post. My eye does close all the way at night when I sleep. The only time I use eye drops are on days like today. I was off from work today and worked in the yard all day. I wore the clear bubble patch but I still get the irritated due to the heat. My job is inside so I rarely have to use drops but they are always in my pocket in case.

I see that your surgery was 3 yrs ago and you still have no movements. Was your facial nerve cut? I was 8 mts before I got a little movement. It's not much but at least I can see a little progress.

The BAHA has helped out with my SSD (single sided deafness). I forgot to wear it to work the other day and I was lost without it. At lunch I went home and got it.

Hang in there,
Ellis

[nancyann]

Ellis:  I am so happy to hear you're beginning to see progress !!!!   That makes my day !!!  And the fact that your eye closes at night & you don't need lubricant during the day !!!!    Way to go !!!!      It is a long road my friend.
Always good thoughts,   Nancy

[1wareagle]

Thanks Nancy,

Sorry it took so long to respond but we were out of town this weekend. Now I can do a closed mouth smile and I am getting the crows feet wrinkles under my bad eye when I smile( I never thought I would be glad to see wrinkles). I still can't wink my eye or move my forehead but I practice doing it everyday. Yes it has been a long road and I can't wait to hear that you have got some movements too!

Ellis

[IAHeel]

Ellis,

Great news!

Fred

[1wareagle]

Thanks Fred,

     It's been a long road but I can see the light at the end of the tunnel now. I'm only about 20% in my recovery but it better than nothing. I feel bad to even mention it because there are so many on here that are waiting, like I was, for some kind of movements and nothing yet. I have never had any patients but the Lord has taught me some through all of this.

Ellis