My Intro

[odirish]

Doc,
Can't you get a gold weight in your eyelid? I have that and don't mind it at all.
I still wear the moisture chamber when my DH takes me out on his bike though.

Mary Ann

[Kaybo]

Mary Ann~
I, along with Nancy (she told me about it on here), had the T3 - Temporalis Tendon Transfer - done at Johns-Hopkins with Dr. Patrick Byrne.   I can't say enough good things about the surgery and him! Look him up!!  I was also not given any options besides surgery - it wouldn't have mattered anyway b/c it was too big for radiation (size of a man's fist) - I was in surgery for 14 hours and had a stroke while on the table.  They didn't even tell me that I would lose my hearing in that ear!!    I never had ANY movement in that side of my face.  Let me know if you have any questions!

K  

[Doc]

Doc,
Can't you get a gold weight in your eyelid? I have that and don't mind it at all.
I still wear the moisture chamber when my DH takes me out on his bike though.

Mary Ann

Hi Mary Ann,

I actually had the Gold Weight Implant done back in October last year. Unfortunately it extruded its way through the eyelid making a bloody mess and had to be removed. They've since sown the eyelid shut half way across, from the outside to the center.  That gives me partial closure, offers protection to the cornea and, allows me to close the eye when I sleep. I have to close both eyes, the good right eye, and the bum left at the same time for that to work.  I also have stock in the company that makes PM Refresh; I use the stuff by the gallon, it offers a lot of relief...nothing else works for me when it comes to ointments.

My Neurosurgeon tells me he'll begin considering alternatives to natural healing at the one year post-op mark if my eye and other nerve issues don't self resolve by than. Nerve splicing and stuff I guess.  Trying not to think much about going under the knife again; that isn't any fun after what I've gone through the last two years; Brain Surgery and before that, Open Heart Surgery in April '08.

You should stay with the forum and share more about your experiences. I'm sure you'll be surprised at some of the advancements made in the treatment of AN's since you initially underwent treatment. Plus there are a lot of nice people to share and learn from and with!

You Take Care and as Nancy would say "always happy thoughts!"
  
Doc

[Jim Scott]

Hello - and welcome back, Mary Ann ~

I'm glad you've re-visited the ANA discussion forums and I hope we can be of some encouragement to you.

It's painfully obvious that your co-worker is an insensitive idiot for making such a hurtful comment.  Well, that, or she's a sadist.  Unfortunately, the world is full of people like her and as our society has jettisoned many of the social rules that underpinned what used to be called 'civility', boorish behavior manifested in ignorant, often self-centered people casually making cutting remarks to others, seemingly oblivious to the hurt their words inflict, is becoming all too common.  The reality is that we can't control what other people do - or say.  We can only control how we react to them.  Of course you were hurt - and I won't try to minimize that.  You've struggled with facial issues for a decade and a half and, in your eyes, the mirror is not your friend.  That being the case, it's not surprising that your co-workers churlish behavior triggered all of the negative feelings about your appearance that you've lived with all these years. 

I wish I had some way of convincing you that although some people do judge us, initially, by our appearance, they usually go beyond that, to learn about our character - who we really are.  I've done that many times with many people and I'm sure that just as many folks have done it with me.  I don't have AN-related facial issues, just an old mug that has had a lot of wear and so, I'm no longer mistaken for Brad Pitt.  Well, actually, I never was - but I like to think that I could have been (30 years ago).  However, I think I can understand your angst and negative feelings about your appearance.   

We have many members struggling with 'facial issues' and most have a good attitude about it and a strength of character that is both astounding as well as inspiring.  They help us folks who don't have 'facial issues' put whatever issues we may have into their proper perspective.  These people aren't saints or martyrs, just regular folks living their lives to the fullest, despite their 'deficits'.  Kay ('Kaybo]') is one of them and there are many others that I hope will add to this thread and help you realize that while your anxiety over your facial problems is real and justified, it doesn't define you.  Not if you don't let it, that is.  Here, you're among people who can empathize with you and want to encourage and support you.  I hope you'll let us.  Meanwhile, feel free to 'vent' whenever you need to.  That's O.K., too. 

Jim

[moe]

I responded with my usual sarcastic wit and said "Brain Surgery, what's your excuse?"

HAhahahaha that is so funny! And the fact that he didn't respond or even question about your experience is good judge of his character.
MOE

[moe]

 These people aren't saints or martyrs, just regular folks living their lives to the fullest, despite their 'deficits'.  Kay ('Kaybo]') is one of them and there are many others that I hope will add to this thread and help you realize that while your anxiety over your facial problems is real and justified, it doesn't define you.  Not if you don't let it, that is.  Here, you're among people who can empathize with you and want to encourage and support you.  I hope you'll let us.  Meanwhile, feel free to 'vent' whenever you need to.  That's O.K., too. 

Well Kaybo is ALMOST a saint.  She's got her kiddos to keep her on her toes too.

I'm another one of those just living my live to the fullest, within my means.

The tinnitus is probably the one thing that drags me down the most, because it affects all social situations, and mental energy. So I try to get control of what I can, and medical/surgical technology is so advanced,---why not take advantage of it, if possible, to change what I DO have control over.------ (like my chewing, eye closure, face movement, etc.....). The third thing on my "AN to do list" is to try the BAHA again. Got the titanium implant in the skull, just need to reattach a new device.

Number one is the facial reanimation surgery, and number 2 is tweaking the eye with a "canthopexy" to close  and tighten it up a bit.

The journey continues.

Hang in there!
Maureen

[Joef]

He said he noticed that when I walk, I sometimes have to catch myself. I didn't think it was that bad. He's a jerk. He's fat and has a flat head, but I never mentioned that to him.

 I still do that... I catch myself a lot in the dark ... I can kayak better than I walk !

flat head ... LOL , thanks for the best laugh I've had in weeks !!

[Doc]

He said he noticed that when I walk, I sometimes have to catch myself. I didn't think it was that bad. He's a jerk. He's fat and has a flat head, but I never mentioned that to him.

 I still do that... I catch myself a lot in the dark ... I can kayak better than I walk !

flat head ... LOL , thanks for the best laugh I've had in weeks !!

...and I don't dare sit cross legged on the floor either...can't stand up without falling over a few times...!  But hey, it's all good!

[wendysig]

i bet that you are not ugly!  keep that in mind.....

i crushed my hand some years ago .... i commented to my wife one night that i dislike the aftermath --- the scars- the turned out finger --- they cut the bone and turned in such a way as to allow me to open a door knob.  fingers are not straight.  she surprised me .... he twisted my hand around and looked for a while, then said, i never noticed that before.  that lie made me feel so good!

then she exposed her breast that had been changed by the radiation and surgery of breast cancer.  She said that she wanted a **** job - her words - to help change her back to where she was.  i did not lie - i said that had not thought of in that way ...  i thought it was her battles scars of her life being saved.  this is good.  and that i have never been put off by her appearance.  i did not notice the difference between them.  and i still do not.

i write this to say that i am my own worst critic....  i know that those that love another - may not see what we see.

i may not say it the best way --- but trust me - those that love you do not see you as ugly.

Hi Mary Ann and welcome,

I have to agree with Carter that I will also bet you are not ugly.  Although I don't have any facial paralysis, my balance has never been the same since my surgery 1 1/2 years ago and lately it's gotten worse and is much worse when I'm tired or in a crowd.      I know some people who don't know me probably think I've been drinking since a couple of acquaintances  have commented that maybe I'd had one to many.  So, although no one looks at me differently because of my appearance, they do look at me differently.  Those who really love you will love you and see you as beautiful as you are on the inside.  You may feel sad when you look at your daughter's wedding pictures, but I'm sure she looks at them through the eyes of love and sees you as beautiful and is happy to have  you in those pictures and will hold the memory of her loving mom being at her wedding  in her heart for the rest of her life and that is a beautiful thing.

Best,
Wendy

[kristin]

Hi Mary Ann,

Welcome! Although I myself haven't been around here in a few years. I understand about the picture thing. I never knew I had a "freaky eye" until I saw myself in pictures. My AN side doesn't squint like my non-AN side does and therefore, in pictures you can see all the way to the back of my eyeball. It's awful. It's been 5 years for me now and I wonder if plastic surgery would help? I'm not sure that it would be covered as medically necessary though...

I cannot believe your co-worker. What a jerk. Please don't listen to that c-r-a-p.

Kristin