I hope I'm in the right place

[ALICAM]

Hi Debbi
Thanks for the welcome ! We do have many things in common, including the stumbling. With my full ear parts removed on the right I'm very prone to balance problems, especially when I'm tired (same with face too) so that with the speech problems, no wonder people think we are drunk.
I had a lot of facial exercises to do after my surgery and through out patients for about six months but doesn't sound quite so specialised as you mention. I was given a little hand held electro nerve stimulator for quite a few months but there is a debate about whether it actually does anything much, but better something than nothing. I think my problem is because of the rarity of my tumor there isn't much evidence or information about 'what to do next'. It really is difficult finding any helpful information. Thats why this site has been a Godsend to me....finally I can ask questions.
As for my eye, well after surgery it didn't close but gradually that got a lot better. I had to use the synthetic tears for a few months but I was lucky where the eye is concerned. Some mornings or in the middle of the night I wake up with very dry eye and it's painful but a few drops of eye gel sorts that out.
Thanks for the chat, Ali

[wendysig]

Hi Ali,

Sorry I'm so late welcoming you to our group.  It sounds like you've been through a really rough time that was made even tougher by not having anyone to talk to.  This group of wonderful people was an enormous help to me and as you can see, we all pretty much feel the same way.  We are here to help however we can.  I consider myself very lucky but also have almost no inner ear have to agree that  balance issues can frustrating sometimes.  Just when I though the worst was over, I went to the movies the other night (the lobby was packed and probably had at least 100 milling about) just watching them made me feel completely off balance.  It also made me realize that I have avoided crowds for the last few months and have lost some of what I'd regained.  My doc always said that doing anything that makes you dizzy will improve your sense of balance.  Guess it's time to start walking in crowds again.  I also had a problem for about a month after surgery with not being able to open my eye all the way.  Happily for me, that problem resolved too.  So even though you didn't have an AN, as you can see some of us have had the same problems.  Feel free to stop by anytime -- we are here to help and support each other and you are most definitely welcome.

Best wishes,
Wendy

[Debbi]

Ah, the crowded rooms... I can totally relate to that!  Nothing whacks me faster than a mob of milling people.  Add the noise level, and you have the perfect storm for bad balance!

Debbi

[b91221b]

Hi, Ali...I offer my "welcome" to the many who have already responded to you.  I, too, am a "newbie"...but the friends on this site have been overwhelmingly supportive and helpful to me through rough places.  So many of our "family" here have been through so much in their own journey, and yet as a 'network', they want to support others going through the same thing.  I find myself just "checking in" from time to time to (selfishly) read, and get my own "fix" of encouragement, and understanding.  Today, I want to encourage YOU...and tell you that we are all here for you...This site has brought much reassurance to my own life...and I know it will do the same for you!  God bless you! 

[moe]

I am also desperate to have a full and normal smile ! I sometimes ask myself 'what would I prefer...the ability to swallow normally, talk normally or have a smile?' I pick the smile !

I understand about wanting the smile.  It was what defined me. I'm hoping for a closed lip even smile and an open lip smile would be good too!
I'm wondering if you were referring to the tendon transfer surgery, also known as the T3 procedure. That is more for people with total facial paralysis. A couple of people have had that.

I'm hoping for some sort of face lift, maybe a muscle "transposition" into the cheek area. There is a temporalis muscle transposition I remember reading about. SO much out there , just a matter of how to access the care.

For me, it all depends on the US military health care system. I'm being seen by a civilian hospital for my nerve transposition, and they haven't given me their final:
Yes, it did work, don't do anything else, or
NO it did not work, let's tweek it or have your military hospital tweek it.

Takes a long time and lots of patience but it WILL happen. I haven't given up hope. Meanwhile the acupuncture is helping.....
You don't give up hope either! As long as there's hope, life continues its path.......
Maureen

[ALICAM]

Hi Maureen,
Wow ! You guys know sooo much more than me. I have gone searching on net for procedures but realise now that I was looking in the wrong place. I really do wish I had found this site two years ago. It is such a load of my mind, not having to constantly moan to my husband or keep things to myself. I'm going to google the procedures you have mentioned. It must be very difficult in the US with the health insurance side of things. Although our National Health Service is not all great. Waiting lists are extremely long and if I hadn't have been covered through my husbands private work health insurance then I would probably still be on a waiting list and who knows if I'd even have got the right type of specialist. When I see my surgeon in Jan I am definitely going to mention these procedures and see what if anything is available. Although I'm not sure if the medical insurance would cover anything that they deem to be 'cosmetic' rather than corrective. Need to try though. Acupuncture is something I hadn't thought of either....so many things to consider now.
Don't be giving up hope though, it seems there is lots of it around here to pass on !
Take care, Ali

[Kaybo]

Hi Ali~
I had the T3 in March 2008 and it was considered "functional" cosmetic surgery by insurance & Johns Hopkins. I don't exactly how the paralysis affects you (ex. speech, eating, drinking) but those are all daily skills needed to "function" in life...
Just wanted to throw that in while I'm thinking about it!

K.