Coming up on my 1 year anniversary

[cassie]

Well, I am approaching the 1 year mark from my 14 hour, very rough surgery. The doctors ACTED like my facial nerve would recover, but I can only forced a very slight closed mouth smile, IF i really think about it. My eye still burns like hell most of the day and wont blink or tear, even with an internal eye weight put it. If i try an open mouthed grin, everything works pretty good except half of my lower lip and it just looks stupid. My eye is all bugged out looking by mid morning. I have felt small tingling, twitches for months but no new movement recently. Do you think its too late to expect anything else? The doctor insists that he only nicked the nerve and didn't cut it. I am losing hope and my self confidence is shot to hell. Something about this one year mark has me really nervous that this is all I am going to get, in terms of facial function.
I just finally got some healthcare i can afford though the govt. marketplace, but they don't cover anything as far as hearing aids, facial retraining or even my doctor. I have to find a new one and I still need gamma knife for the chunk that's still left. I had a 4.5cm before surgery, and i still have almost 1cm left, I am so scared that any very small advaces I've made in my facial function are going to get set back or wiped out completely after my gamma knife. My doctor just keeps saying to wait, give it time. Blah, blah, blah. It's like, he just does the operation and doesn't care much about the after effects. I am 48 years old and i was an acive health nut before all this so this has really hit me hard. I feel so much worse the closer it gets to that one year mark.

Is there ANY advice anyone has as to what I can do to help the face and eye "get going"? I have taken up/ resumed my former level of exercise because I thought it might help. I was getting more tingling in the face area after an intense workout BUT it's been doing that for like 8 months with no real improvement.  Plus, it appears my stamina is the only thing that has returned all the way. Finally, after almost a year, I no longer need a nap every day. I suppose i should be grateful for no headaches and an active lifestyle, but I am so tired of everybody looking at me like "oh, what happened to you?" and sitting there every morning putting makeup on only one eye and thinking "why do I even bother?"

[saralynn143]

Cassie this has to be real quick because I need to dash to work. Doctors will tell you that eighteen months is the outside range for recovery, but there is plenty of anecdotal evidence here to suggest that healing can go on for years. I am six years out and saw slow progress over the first five.

Please do a search for a thread called Facial Progress by Jeanlea. It gave me a lot of hope at the beginning of my recovery.

More later. Take care.

[saralynn143]

Here is Jeanlea's post showing change over a three-year period.

http://www.anausa.org/smf/index.php?topic=7247.msg75716#msg75716

[LakeErie]

I noticed you never stated where your surgery was performed and by which surgeon/s? How much experience did they have? Is there a facility at your hospital that can work with your paralysis if it comes to that point, such as a plastic surgeon?
I ask that because there is a plastic surgeon at the Cleveland Clinic, as one example, who can correct facial differences do to paralysis with an outpatient procedure. He cannot reanimate your face, restore movement, but he can restore more normal appearance. He was a speaker at one of the NE Ohio ANA support group meetings about a year ago.
I would think that your surgeon, if an experienced AN doctor, would know the avenues available to you if and when such treatment would be advisable. It may be that insufficient time has passed to give up on recovery as of now. But do not believe you have no options if the worst case does happen. While I never has facial paralysis, I did have vocal cord and swallowing muscle paralysis for some time. It was 16 months before before seeming more normal. And It is still getting better at 34 months. Good luck.

[cassie]

Hey there. Thank so far for the replies. I am in St. Louis and my physician does and has done a ton of these ANA procedures. He has stated that if and when I come in at the almost 16 month mark for a check up, that if my face still hasn't improve that "we will look into other options". But what concerns me is that he said this in passing, like really casually, and i feel like I'm suffering with this every day. I already will have to pay out of pocket to continue seeing him and I definately won't be able to afford all these surgeries I may need just to be able to have a halfway decent face again. And I'm scared the Gamma Knife that I am getting soon will put my facial recovery back even further or not at all.
Sorry to sound so down, but I AM! I feel like I am paying thousands and thousands of dollars just to live and have maybe about just 50% of the quality of life I used to have. But then I see my 7 yr. old daughter's face looking at me and needing me and it forces me to go on. I have to keep hoping and praying for my face to come back some. I feel okay other than that and actually I am more okay with my face than the general public. I own a restuarant with my husband and I refuse to take orders because of the way people look at me and that fact that i can't hear half the time. But I can just tell that they are judging me and wondering what happened to me even if they don't say a word and believe it or not, a few have! I just want some more quality to my life back. I want to feel pretty again.

[mattp]

Hi Cassie,

Don't think all is lost.

I had a 6cm+ cystic facial nerve tumor, and in order to have it removed, I had the facial nerve cut. I was left with severe LHS paralysis, with no ability to smile at all. There are many options you can explore in order to get your face re-animated.

Myself, I had some extensive nerve surgery performed. A masseter nerve transfer was performed, and I can now perform a closed mouth smile by biting down. A number of other nerves were moved around to give my face normal symmetry again - if you walked past me down the street, you wouldn't even know I'd had anything done.

I would suggest exploring the options with a plastic surgeon, I can vouch for the results!

Cheers,
Matt

[LakeErie]

Cassie, I had a subtotal removal of my relatively large tumor and was told I would probably need GK as it is likely there will be regrowth of the remaining tumor. My own research showed UPMC GK treatments today have a 1% rate of facial palsy and that the 1% are temporary. Done by the right professionals, it appears that risk to facial nerve from GK is minimal. I hope this fact allays some of your concern about any future need for gamma knife