ANA Discussion Forum
General Category => AN Issues => Topic started by: odirish on March 19, 2010, 05:29:50 am
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I'm not sure where this goes. My name is Mary Ann. I had surgery to remove my AN in 1995. I was 43 at the time. My tumor was 2 cm. and I was left with facial paralysis, hearing loss and a gold weight in my eyelid. I have some movement on the right side of my face. I wanted to share with some of you who are in the same predicament as me. About 7 or 8 years ago, my Dr. did a cheek implant to even up my face. I loved it. I am just now looking into getting it done again. Obviously there is not a permanent fix for it, but it makes me feel a little more confident about how I look.
BTW...do any of you avoid pictures? My daughter got married 2 years ago and I was devastated to see myself in her pictures. It's been 15 years for me and I still can't comes to grips with it. :'( I hate it. I just had an incident about a month ago when my co-worker said "you know how i can remember people? I think about some sort of disability they have and then i can put the name to the face. You know, like you havethat thing with your eye and your smile" I felt horrible, like "yeah, I know I'm ugly, do you have to remind me?"
I'm so glad I found this site. I don't want to sound like a downer though. I just can't find anything good about this. Maybe though posting and talking to others in my situation, I'll be able to deal with it a little better than I have been over the past. Thanks for listening.
Mary Ann
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Hey MaryAnn and welcome! I'm thrilled you found us as well and good to have you here. I cannot comment regarding what you noted but I know that many here will do so to share their insight and experiences with you. Much of what you note has been commented around here and I know that the gang here will chime in.
I just wanted to give you a proper "hello". :)
Again, welcome!
Phyl
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Hi Mary Ann and welcome to the forum..Glad you found us.
JO
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Welcome, Mary Ann.
I'm glad you've joined us. The more the merrier ;D
Jan
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Welcome, Mary Ann to our group. I am sure you will receive some posts that will help you with your situation.
Take care,
Grace
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Hi Mary Ann .....
Adding my welcome. Most of us wish we could undo parts of our lives because of many different kinds of things ..... some we had no control over and some we wish we had done differently. Unfortunately we cannot undo the fact we had/have ANs.
It is very heartless of someone to call attention to something you wish you did not have, but have no control over. You will find many wonderful people on this forum who know exactly how you feel. Perhaps some will have better suggestions than I for how to deal with some of these kinds of problems.
Please know that we are here to support and help in any way we can.
Best thoughts and prayers.
Clarice
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*Clarice~ LOVED the 1st paragraph of your last post - good reminder about ALL aspects of our lives!*
Mary Ann~
Good Morning and Welcome! I, too, have all the things that you have and had surgery in December of 1995 when I was 25 and newly married. I had LOTS of complications, but AFTER I finally got a little past that (I think a year was really too soon for all I went thru but wouldn't change a thing now), my life got SUPER busy having and chasing after kiddos! For me, I think that helped a lot to not dwell on the negative. I have also realized (within the last couple of years) that part of it is just how I am made. I was raised with a very strong faith and I think that that contributed 100% and am surrounded by supportive and loving friends and family. I am very happy with the person I am on the inside (of course I have faults) - hopefully this comes across when I meet someone - NOT my crazy face! ::) I went back to teaching 1st grade 3 months after my surgery and I kept telling the kids that it didn't matter what you looked like on the outside...it was what was INSIDE that mattered...maybe I said that so much that I started to believe it! ;) I'm sorry that your co-worker said words that hurt you - could it be that YOU say things and she was just saying that (I know I joke around about my face some) because most of my friends say that they don't even notice it or think about it anymore - one SWEARS it has gotten better since we met (& that was before the T3!)!
Where did you have your surgery and what part of the country are you in? I am in Texas. If you were ever like to chat - just PM me your number & I would be happy to call you!
K ;D
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Good Morning Mary Ann,
Were you a Gilligan's Island fan?????
I too have the facial paralysis, hearing loss and gold weight (oh and bad tinnitus too). It has been a long 3.75 years post op for me, but I have GREAT news!
I had the nerve transposition (12/7) 18 months after the original brain surgery.(where the face nerve was reconnected with poor result). The 12/7 had partial results.
I am scheduled for a "gracilis flap" surgery on May 13.
I JUST started the thread, so people can follow my recovery on this surgery.
Here's the link
http://anausa.org/forum/index.php?topic=12081.msg139390#msg139390
The trick here, is that they take the masseter nerve and connect it to the transplanted muscle, so I will be able to smile.
Do you live in WA? This procedure is done at UW in Seattle by Dr. Neligan- one of the BEST.
PM me also if you wish. I am so excited about this surgery. It will be another long one but worth it.
If your face and eye still bother you, so be it. :-\ I know how you feel. I'm also going to have a couple eye procedures in the fall to help with eye function.
I'll be interested to hear who your doctor is. Does he do the nerve transplant with the muscle transposition??
Maureen
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Mary Ann:
I'm glad you joined us.
If you don't mind, I'd like to know more about you. How much hearing or hearing loss do you have? How do you deal with that?
How's your balance? Do you suffer from headaches or wonky head this far out after surgery?
Syl
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i bet that you are not ugly! keep that in mind.....
i crushed my hand some years ago .... i commented to mey wife one night that i dislke 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 bertween 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.
carter
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Hi Mary Ann,
I am so glad you found this forum! It is a great place to share, vent, celebrate, and connect with people who know exactly what you are going through.
I don't have much insight on your situation, as I haven't had surgery yet. All I can say is what my Grandma always tells me..."Beauty is as beauty does". Have you ever met someone, thought they were beautiful and then once you got to know them they were just plain ugly? Or, have you met someone and as you got to know them the more beautiful they became? Beauty grows from the inside out, and I am sure those that know you think you are gorgeous!!
Kim
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My Turn,
Back in December '09, five months after my surgery, I was up in Milwaukee at my companies production facility. I was walking down the long hallway in engineering, my left eye patched and using my cane as always, when a factory worker approached me from the opposite direction. He asked "what the hell happen to you." I responded with my usual sarcastic wit and said "Brain Surgery, what's your excuse?" He didn't say a thing and went on his way. I had a good laugh at his expense, a nice rest of the day and a cold beer at the hotel bar later on that evening. I had to use a straw to drink that beer because of facial paralysis that I still have today along with really lousy balance and a bum left eye; still sown half shut to protect the cornea!
I wasn't much to look at before surgery and since, I'm certainly no less of a wisenheimer as you might have guessed. That part of my Brain is well intact and functioning famously! Thanks for sharing and welcome to the forum. Me, you and a lot of other people that share the AN experience with us may not be pictures of health but we certainly have heart...big, loving and caring hearts...smile, you've got plenty of company!
Take Care!
;)
Doc
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Boy, you'd sure hate to sound so mean, but it would have been great to look her straight in the face and say, "I'll always remember you for having no brains."
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Hi again. I shouldn't let this get me down. Sorry for being such a downer. ::) I had my surgery in '95. I was 43 at the time. I wasn't offered any options other than surgery. Believe it or not, I had gone to my family Dr. twice because of sudden hearing loss and he told me I had water behind my eardrum and gave me an antihistamine. I finally insisted on seeing a specialist and that is when they discovered the tumor. I was told it was 2 cm. (I think they call it cm). That was in Oct. I was admitted on Dec. 19th for surgery but spent 2 weeks on the hospital. I developed a spinal fluid leak through my ear and had a spinal tap done twice. (ouch) I was not allowed out of bed at all. I had super migraines and very bad vertigo. I got to come home Christmas Eve with complete bedrest.
I was off work 11 months. I think what upset me the most was that I was told that facial movemeent would start
to return in about 6 weeks. 7 months later, I felt movement. I have about 30% recovery. I had my surgery at Penn State Hershey Medical Ctr. Afew years after my surgery, I was so depressed that I talked to my Dr. (who does head and neck surgery) asking if anything could be done about the droopiness. He then suggested the cheek implant. He took gortex and made a sling across the muscle to hold it up. he said it may only last about 3 years, but it was more like 6 or 7. I loved it and I'm getting ready to call him to have it done again. My face wasn't 100%, but i bet it was about 75 to 80%. I will also ask if there are any new and improved surgery that may be even better.
My balance is still off. I work on that at the gym, but after 15 years, I don't think it's coming back anytime soon. If anyone has suggestions, I'm open to them.
I am probably more aware of my looks than anyone else. I just hate it. I can't get past that. The guy I work with also made a comment about my balance being off. 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. ;D
Mary Ann
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Boy, you'd sure hate to sound so mean, but it would have been great to look her straight in the face and say, "I'll always remember you for having no brains."
I'll keep that in mind. ;D
Mary Ann
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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
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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!! :o I never had ANY movement in that side of my face. Let me know if you have any questions!
K ;D
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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
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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
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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
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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
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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. ;D
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 !!
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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. ;D
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!
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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
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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