ANA Discussion Forum
General Category => AN Issues => Topic started by: satman on December 05, 2008, 10:53:26 am
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just out of curiousity, what would you like to have back, your smile,hearing or blink reflex ?
me personally i would like to have my blink reflex back
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Definitely my smile. I never thought I had a perfect smile before, but I sure would appreciate having it now! ;D
I asked Santa for it for Christmas this year. Let's hope!!!!
Lori
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That's a tough one John...hhhhmmmmm... smile or blink, blink or smile.......SMILE, no wait, BLINK (I think)
Always good thoughts, Nancy
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Pain free days.
Syl
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To be able to move freely w/o feeling like i have a cinder block in the right side of my head. :(
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Early on I would have said my blink...the dry eye was painful and made my daily life uncomfortable. Now I would say my smile. Or just a more normal face.
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smile for sure.
in the early days i thought the eye was the worst part (ok, for me was the double vision, then the eye). but now having dealt with eye care for so long you kind of get used to the glasses, drops, ointment, tape etc. But the smile cannot be helped or corrected so easily.
hearing losses + tinitus can be pretty nasty at times too... like in a restaurant... but most of the time it is no bigger. I am glad i work in an office... relatively quiet workplace.
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Well, since my smile is slowing coming back, I'm going to have to go for tears. I would just love to produce some big ol' tears from my AN eye. And, yes, the blink would be nice too.
Debbi
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Definitely my hearing. It was perfect before the surgery. My smile has always been lopsided so it doesn't matter that it isn't perfect. I can blink just fine and don't have dry eye, so hearing gets my vote!
Brenda
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I can blink and I can smile. However, I have limited hearing in my AN ear. But, of my symptoms that I'd like to get rid of, it depends on the day. Most days it's tinnitus, and the other days it's facial numbness. My hearing is at least 3rd on the list.
Sue in Vancouver USA
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I can blink & smile, but oh do I miss my hearing. It was perfect before surgery. I think if I could hear on both sides it would probably help my balance and "wonky" head.
Linda
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I'm with Linda, I'm fortunate enough not to have facial problems, but I do miss my hearing, especially directionality. I forgot where I parked today so I set off the alarm from my key fob, I still couldn't figure it out and had to ask someone else in the parking lot which direction they thought the sound was coming from. Not exactly a great idea, I know, but as it turned out, I was actually looking in the wrong direction.
Wendy
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I would want my smile back, and most of all the confidence that went with it. But they are coming back, just in a different way.
Lainie
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Definitely my smile. It's my personality. I don't feel like me without it. But I started Botox treatments today and hopefully soon it will start to return.
But I do have to admit, the balance/wonkheadedness issue is a close second.
David
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I'm with Debbi. I'd like to have tears from the AN eye. A little less tinnitus would be nice too.
Patrick
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Hmmmm -- there is a lot - but definately at this point it would be nice to have tears and not have to hold my eye shut ......
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I like this topic. I will keep score, though it seems like it will be a tie in the end. Counting me for hearing and no tinnitus, I make it
Smiles 5
Hearing 4
Blink or tears 4
Tinnitus 3
pain, movement, numbness 3
Seems like we don't know whether to laugh, cry, or flirt! ::)
Steve
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SMILE!! ;D SMILE!! ;D SMILE!! ;D
Hands down...I don't have any of that stuff - smile, tears/blinking, or hearing, but I am with David on this one - the smile is more defining of the person. Not those that know you because they hear your joy in your voice, but for just everyday people you meet on the street. I always knew I had a huge, toothy smile. Dr. Byrne pointed out to his resident that I was in a more unique group because when I smile, every nerve (?) fired -- I guess not everyone does that! Oh well, 1/2 is better than nothing!!
K ;D
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Definitely hearing. I do have my smile so it's not that. I'm 5 months post-op, and only realized a month ago, that when I cry, I have no tears from my AN side.
Guess I don't cry that much!! It seems kinda weird.....but definitely hearing.
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When I think of what has made daily life the most difficult it is the loss of hearing so I'd have to say hearing.
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When I was going for facial rehab, I was asked this question everytime...and my answer was always and still is SENSATION. I'm so tired of feeling like my face is huge. I'd like my smile but to feel normal would be heaven.
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My smile and my hearing (hope santa got my letter)
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I would like to add that although my balance has improved quite a bit since surgery, I hope to see continued improvement. Wonky head is still a problem for me in spite of my best efforts and I still weave when I walk. I managed to stand on a step ladder to put up outdoor Christmas decorations(just looked straight ahead for the most part and at the lights and garland in my hands -- made the mistake of looking down opnce and didn't repeat that). Every now and then I found myself clinging to a window frame or the fence for dear life though because I felt like I might fall. At almost 4 1/2 months post-op, I feel that I am doing very well, but I would like my new normal to be a little less abnormal.
Wendy
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Well, since I have my smile and hearing I would have to say that I agree with Pembo; I would love to have the feeling back on the right side of my face, but tops on my list is pain-free days. I would also like to speak easily again; for now it's like I have a mouthful of marbles. I guess I'm greedy and so I want everything to be the same as it was before surgery, minus the tumor.
Marci
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I so miss my smile (sigh...) I have learned to deal with the SSD and eye issues.
Jan D
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I will have to go with the "eyes". My smile is coming back slowly, and I do produce tears (when I eat spicy or hot foods), but it still doesn't shut all the wa y on its own. I miss my contacts!!
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A week ago I would have said, give me a smile for Christmas as nothing can help that, but now I would say let my eye tear again. Monday evening after work I went to Halpins pharmacy to pick up my regular supply of eye ointment, 24 tubes @ 3.63 ea. When I got there the shelf was bare, panic set in, told myself that they got a new shipment in but didn't get it on the shelf yet. Talked to the lady that orders the ointment for me and she said she can't get any and won't until the end of December. My whole world closed in on me, Christmas is coming and now I'm going to have to spend my time and money trying to find eye ointment. Most stores don't carry many brands of ointment and only a couple of tubes of the brands they carry not to mention that they run $8 to $12 a tube. I spend over $1300 a year on ointment, if I can't get what I currently use it will cost me $2600 a year. The insurance company won't pay for it. When I got home my husband and I went on the internet and found a company that sells it for half the price so we ordered it. Two days later we hadn't received a confirmation or back order on the ointment so I called the company. They said the ointment was back ordered for at leat 2 weeks. I called the manufacturer the day before and they said there wasn't any problem with the production of the ointment. I have since tried several places and they ALL say they can't get it so I have a bone to pick with the manufacturer. I have placed several orders over the internet for the ointment in hopes that someone comes through for me soon. :)
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without hesitation ... in order .....
1. eye problems! ... its been 3+ years.. and I can go thu the day wo/drops ... but still does not blink or feel right...
2. Smile back! I see tons of improvement over the last year.. but still not right, and still feels like I'm at the dentist :(
3. Tinnitus! ... I've had this this for many years before AN dx .. but I still wish it was gone ...
4. Balance .. I can still work a kayak, so its not a huge deal, but still hard at night.. and could not pass a DWI toe to toe walk test dead sober....
5. last but not least... hearing ... its funny, when I first found out about the AN .. and realzied my might lose my hearing, that freaking me out... but its the least of the problems... (the BAHA helps)
note: I dont have any headache problems... if I did, that would of topped the list...
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I'm with Joef.
Not to brag, but my only really annoying issues are SSD and numbness on the AN side of my head, which still feels like a block of wood some 19 months post op.
I love my BAHA, so SSD isn't really the issue to me that it once was - so I'll pick numbness.
I just want my head to feel like my head again!
To all of you dealing with larger issues, I hope I don't sound shallow here - and I pray that Santa and/or God is listening to all of us.
Jan
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i would want back my hearing, i am also grateful that i got a second ear so i can still listen. but it is just not the same....... :'(
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You know how it is when you open a package and can never put the contents neatly back in the box? That's how my head feels most of the time--like it was opened and the contents just don't fit in there the way they used to. At times it feels like there's too much space in there. So when I rest my head at times, it feels like the brain doesn't have the cushion it used to. Other times it feels like the brain is too big for the skull. I'd like to have the old package back.
Syl
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Syl,
WOW, I wish I wrote that!!! You hit the nail on the head......ouch that hurts :o
I wish it didn't hurt so much for me to smile or laugh. I'm grateful I can still smile but it really does hurt more and more these days to do so. I also wish my energy levels would return. I do not know if it is the result of the surgery, the facial neuroma, the constant facial pain and headaches, or the medication.
Anne Marie
P.S. If anyone finds my sunny disposition......I want it back. I think that's what I wish for the most. I'll even pay for the postage! At the moment I'm waiting for the other shoe to drop!!
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Syl
I echo Anne Marie -- I'm going to use that explanation next time I see my doctor. That is exactly the feeling.
David
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Anne Marie,
You have already had your surgery right? I can't tell by your post but are you due for another surgery? Your facial nerve is intact right now is that correct? What is a facial neuroma and did they not get it the first time. Sorry for the questions but I never knew your situation.
Angie
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Angie,
I had a translab Sept 2006. The Dr at the time went in totally unprepared when he found the facial neuroma. He debulked the tumour. I did not care for this Dr or the neurosurgeon. Joining this forum put in in touch with the Dr I am seeing now. He removed a scar neuroma that developed under my scar this past July. I will need a nerve graft at some point in time, so that is why I am in the watch and wait category for now. I have the tumour on the facial nerve instead of the acoustic nerve.
How are you Angie?
Anne Marie
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Hi Anne Marie,
Just trying to make it through the holidays. I have 18 people staying at my house for 8 days this Christmas. We have family from San Francisco and Mississippi that spend holidays here since we have the room. boy...aren't I lucky. I don't cook but luckily my husband does and enjoys it so we shall see.
hmmmmmmmm.....I'll play along. What would I want back?
Days when all I worried about was what color of nail polish I wanted, days when my only ache was from that nice glass of vino from the night before, waking up feeling refreshed and rested, my happy go lucky personality, my face, smile, blink, etc....my childhood which was a fairy tale...NO worries. Okay...I'll stop. My little guy is wanting rocked so must go. The other day he asked for milk and I said just a minute and he said......"No now or you're fired!" (he's 3)
Angie
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Well truthfully I would want it all back.
But hey - :-\ I cannot go back and my daily motto is
"Keep moving forward"
Is the cup half empty or half full? :-\ ;) :) ;D
Since my AN I have learned to lip read, made the most wonderful ANA buddies, met amazing people in the field or neuroscience… and my learning curve has gone way up.
Before this tumor I never would have a considered a career path into library science. It was the hearing loss, hyperacusis, and facial movement impairment that made me choose from moving from a fine arts high school teacher vocation to the thinking about being in the library vocation. It was buddy "Jeff", of the Château Deaf post, that pointed me to that vocation as he went from fine arts teacher (Band) to librarian. (Such and inspiration of courage he is!)
Unless this experience happened I would never have discovered how much I love working in a library… or reading & researching neuroscience so much. (This brain plasticity stuff is fascinating!)
I have grieved what I lost – yeah- but I cannot go back. The eye weight may help. Baha and cochlear implants can help, plastic surgery too – but hey I cannot go back.
Baby I am moving forward. It is the best way to keep moving on with your life and maintaining a positive :) attitude.
I am not necessarily thankful for that big ole tumor and the pain and grief it caused (not just me but my family) - but wow have I had an amazing experience from all of this! And what an awesome bunch of people I connected with- that I otherwise would not have.
Regardless of the loss of: blink, hearing, outward smile and now additional hyperacusis and tinnitus...I am still the same person smiling on the inside. And you know… the ANA folks I am meeting at meetings and here on the ANA- they really make me smile. What awesome characters they are -which shine from the inside out - !
Think of Fiona in the animated movie- Shrek 2. She had the opportunity to go back to her picture perfect princess fairytale self- and she chose to stay as an "ogre" because she was encountering so many more sincere, honest and genuine people who accepted her for the content of her “character�... Not her looks and abilities.
Choosing not to go back and to “keep moving forward�
DHM
P.S. Oh and “Satman Super 8� :-* who started this thread- you ARE one of those special ANA buddies that I SOOH cherish. Keep moving forward buddy. Keep moving forward! signed your “4�- the other half… ;)
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Hi DHM,
Very well said. I do try to look ahead, not back and I think most of us do -- this thread just has me (probably most of us really) waxing notalgically for what we wish we could regain. For the most part this is a very positive group of people, it just that sometimes we miss what we lost and need to have a little bit of a pity party. Not entirely a bad thing as long as we don't stay there too long.
Wendy
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I'll be selfish and say all three. Actually my smile is pretty much back to normal, at least prior to the Botox two weeks ago.
My eye is the most important right now because it is still partially sewn shut. I'd just like to be able to see out of the whole thing. I really miss my hearing. Had good hearing going in.
So...#1 eye, #2 hearing.
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I like this topic. I will keep score, though it seems like it will be a tie in the end.
Time for an update:
Smiles 8, Hearing 9, Eyes 7, pain or numbness 7
Basically a tie, just like I thought. ;)
I think DHM captured something in her post. Many of us have lost something physical, and now realize how precious it was, but we have also gained something in our hearts and minds, and found a new way to live our lives. Forward it is.
Steve
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nice work steve , it is pretty much even.
well we can all hope, xmas is on the way.
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This may seem greedy to some. but I'd like my full sense of balance back too. Although it has improved greatly, I still lose my balance unexpectedly at times I would also like not to have wonky head. This is an issue I sometimes feel, and probably rightly, will never be completey gone.
Wendy
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I have not answered this and can't say for sure which just one thing is what I want. Depends on the day what is the most annoying. I am a 4 surgery survivor and really lucky to be pretty good for all that I have been thru. I live a pretty normal life but just have to keep watch on what I do and in some ways wish I didn't have to. I have forgot what normal feels like since it has now been over 7 years since have even come close to feeling that way. I guess my latest is balance as we have ice outside now and I don't dare walk on it. My husband couldn't understand why I was on the go so much to do Xmas shopping and errands while we had dry roads and sidewalks.
I am most grateful that I got some hearing back this spring. That means the most to me!
Cheryl R
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what would I want back? Honestly? This is just me and my thoughts... but... truly.... not a thing. Many here have seen/met me. They know the all-encompassing issues I deal with on a daily basis (physically, etc). I have yet to "mourn" my old body. But, for what has not killed me has made me stronger. So... for me.... I have learned to embrace what I now have lost with my physical (and yes, AN) issues..... I've learned to accept this is the way I am now.... I don't look back..... I take what has now become of my body, put a positive twist to it as best as I can (ie: my involvement with the local Disabled community, etc).... and I forge forward.
Honestly..... what would I want back? Only my bigger bank account before the economic crisis hit.
Be well all... stay strong.... happy holidays to you.
Phyl
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Phyl~
I TOTALLY agree with you - I certainly don't sit around everyday mourning what I don't have anymore (I think you know this about me!) - but IF I could change one thing back, it would be my smile!! ;D Most days I don't have time to stop & think about what is "different"!!
Happy Holidays!!!
K ;D
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There are times where I would swap some facial paralysis or eye problems for the headache issues I've had for the past 6 years. I can't exercise without giving myself a whopping headache or roughhouse with my grandkids either. The meds I have to take for the headaches make me feel dumb as a box of rocks and leave me unable to think clearly enough to paint more than a few strokes a day. They have also given me osteoporosis which I have to take more meds for. Yuck. Give me a crooked smile anyday.
Capt Deb :-[
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Deb~
I would GLADLY keep my crooked smile to continue to keep the headaches away! I had some whoppers before surgery, but I doubt they pale in comparison to what you have - I pray all the time for you and in thanks that I only have all that I do!!
K
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if i smiled as greatly as Lori ....................wow id want that back too............
in my case my rt side of face, my an side, to go back up. it is really the only residual "problem" i have as it affects my dentures too...............
But those are still MINOR for me cause its gone , wasnt cancerous, and hasnt come back ...........Big things there......other things little by comparison ;D 8)
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Aw, thanks! I think I'm blushing! ;D
You're right though - sometimes we need to remind ourselves that the "minor" inconveniences we are left with after treatment are definitely small in comparison to the actual AN. Sometimes I need a little kick in the butt to remember that! :-\
Lori