ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on June 21, 2009, 11:15:33 am
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Welp. I am 2 years out with slow recovering facial paralysis. Here is what another year in recovery has done for me...............
We went to the lake yesterday and rode around in the skiboat and I sat there thinking how much better I am this year as compared to the last time we went to the lake last summer.
Last year:
Sat in the boat as a spectator. Didn't ski. Didn't innertube. Didn't get in the water. Had eye patch covering weak eye. Finally took it off only to suffer very bad red eye from the windy boat ride.
We always enjoy a nice beverage at the lake and I remember drinking my beer with a straw because my lips couldn't form around the can.
The bumpy ride in the boat gave me a major headache by the end of the day.
The music from the radio added to the headache.
After 3 hours on the water I was ready to go home.
Got home and poured myself into bed sad and depressed for the things that I no longer could do.
This year:
Was in the water most of the time. Skiing and on the 3 person innertube with my two boys. Had no eyepatch covering my weak eye. Had no sun glasses on and nothing protecting my eye and at the end of the day my eye was perfectly fine. No redness, no dryness. Was able to blink against the forceful winds blowing on my face. Had external eyelid weight on and it stayed on in the water and wind.
I drank beer STRAIGHT FROM THE CAN! This is a huge accomplishment not only because it taste better but because my lips formed a tight seal and didn't spill a drop!
The bumpy ride on the boat and on the innertube was exhilarating and pain-free.
The music from the radio provided the perfect sound for me and my little boys dancing on the front of the boat before doing cannon balls in the water.
After spending the entire day on the water we got out of our swimsuits and dressed on the boat to eat at our favorite restaurant on the lake......Fisherman's Wharf. (after finding what we thought was a secluded area on the water with no other boats we had all gotten completely dressed on the boat IN FULL VIEW of people sitting on their balcony in a beautiful home on the hill. They waved as we rode off. Ugh. Provided lots of laughs for us and for them I'm sure. :o
Enjoyed Mahi Mahi grilled and a wonderful Cabernet at dinner and got home at 11:30pm last night and poured myself into bed exhausted and happy.
Angie
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Well there you go. It's great to be enjoying life again. Have a wonderful summer.
Sara
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Angie ~
Your comparison of this year's lake outing to last year's was not only informative but definitely compelling and very uplifting! A wonderful guide to those struggling with post-op issues that need to see how recovery is more than a goal - but a reality. Thank you - and may you have many more of these great days ahead as your recovery continues. :)
Jim
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WOW Angie - what a difference a year makes is right ! !
I can relate to forming a seal - I can drink from glasses, etc. since my T3 surgery.
Great news on your continued healing - what a success ! !
Always good thoughts, Nancy
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Life is great adnd you are enjoying every minute ` way to go !!!!!!!!
Michelle ;D
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You know I am doing much better than I was this time last year too... Heck I am up on a ladder painting trim on the outside of the house (wearing a snowboard helmet for extra safety- looks very silly in the summer but who cares what it looks like I am back at life again )... I stopped painting the outside of the house when I was told about the tumor and was getting dizzy on it. Now I am up there with no balance issues...
Hmm maybe I should practice the unicycle up there on the roof- now wouldn't that just freak my family out ;) (I am kidding!)
But hey one day I hope to post pictures of me actually riding a unicyle...
Life does go on ... and I am thankful we caught the big ole brain bogger when we did...
Fathers Days was just so special today as I was able to be there with my husband and kids- and not need an afternoon nap. We went fishing and then cooked up our rainbow trout for dinner...MMM
Yes one year makes a huge difference... and more so 2 years...
Here is to more healing 8)
Cheers,
DHM
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Yes one year makes a huge difference... and more so 2 years.
As a 3 year surgery/radiation 'veteran', enjoying my life, I'll add my robust AMEN to that assertion. :)
Jim
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Angie,
Thank you so much for sharing that. I'm wiping tears from my eyes, or at least from the one eye that will actually produce tears. I've been so down lately thinking this was it. I'm at 14 month. 1st anual MRI is tomorrow. Just hearing that progress can be made from year 1 to year 2 is huge! Thanks!!
Susan
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Susan,
Keep your chin up babe. I'm at 2 years post op and am finally enjoying my new life. At 14 months I was miserable still so YES it does get better. It takes forever + 1 day. I'm right there with ya.
Angie
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Thanks, Angie for sharing this. It does put things in perspective. And just reading the details give a much more vivid picture than 'I improved a lot over the last few months!'
Keri
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I haven't done a cannonball off the back of a boat in a long time. I feel like a slacker now. I wonder if I can get my mom to take me out? :D
Sounds like a great summer adventure. Enjoy it all, Angie.
Steve
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What wonderful and happy news, Angie!
Those simple pleasures of life are great, aren't they?
We have such a different perspective on life now and appreciate the simple and fun things life has to offer.
I'm 3 years post op and am still truckn or pluggn along, and not ready to stop on MY goal of facial symmetry and a smile (or half smile ;) )
Susan, I will PM you.
I too had/have complete left sided facial paralysis and it is nerve wracking. I'm not giving up hope though.
Have a great summer and enjoy those lovely things summer has to offer!
Maureen
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Angie,
You made me day! No, you made my MONTH!!! That gives me such hope that although things are going slowly and the doctors aren't too hopeful (what do they know) reality is that there are people out there still progressing after 12 months!! Thanks for giving me hope!
Julie
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I just had graduation with my kindergartens and of course the parents wanted photos and I agreed (not really wanting my picture). I got a copy sent to me from one of the parents and man I wanted to cry, i thought I was so much further along and then WHAM I see a photo and I look terrible - I am going to cry (not in front of my students). Yes life is good and I am thankful that I have recovered this far but seeing a photo makes me very sad - will I ever be back to the way I was?? Maybe I need to face it that I am not ever going to be the same again! :'( :'( :'( :'(
Harsh reality!
Michelle :'(
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Michelle ~
I'm sorry you were upset by the school graduation photos. From the photos you posted here last February, you appear to be doing quite well with regaining your facial mobility. I suspect you may have been harboring some slightly unrealistic expectations that were abruptly shattered when you saw yourself in that photo. That can happen - but it shouldn't be totally depressing. I won't attempt to give you a pep talk here but I will say that your avatar photo is hardly 'terrible'. Do you show some facial deficits? Yes, but not so much that it could be termed 'terrible'. Don't be so hard on yourself, Michelle. Full recovery will very likely happen for you but it will take longer than you or anyone else would like. That's the true 'harsh reality'. Try to be a bit more optimistic - and keep realistic expectations. Your facial recovery is not complete - yet - but it will be. You don't look 'terrible' and you I'm sure you'll look even better six months from now. :)
Jim
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Michelle,
I had the same feeling about my pictures at my son's wedding, and another son is getting married next month, more pictures, AAGGHHH. But someone here said something that has stuck with me and gotten me through a lot. Here it is "There are lies, there are damn lies, and there are photographs". Pictures are LIES! What you see in a photo is not how you really look in motion. For those of us with paralysis a "still" isn't very flattering but we look a lot better in real life. So put those pictures in a drawer somewhere and remember you look a lot better than that. I know this is true because the videos of me at the wedding are so much better. But don't stop taking the pictures. They do help you see time progression. Some friends took pictures of me in the hospital and I look so much better now. Not great, but better. Hang in there.
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Thanks gang, that was my wee pity party that is over now. A closed mouth smile is best but I am such a smiley happy person and smiling is something I would do every minute of every day. I was known for my huge molar smile and at times I feel sad I really liked my smile. When I smile now each side looks fine on it's own but not together, there is only symetry at rest not while I am smiling. One eye is open more and my mouth I'd lopsided. You are right time will help! Trying to be my optimstic self, some days are just harder than others.
Thanks for letting me vent. No one sees this side of me, many think I should just get over it . Wishing they could walk a mile in my shoes then comment!
Michelle
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Michelle: I'm sorry you felt bad about your picture. I always had a great smile too - my aviator picture is pre-surgery, my AN side.
You just need more time - you have been getting improvement & will continue to.
Pictures are pictures (some are good, some aren't), your aviator picture looks great, not yet where you want your smile, but you can see it coming ! !
Continued healing my friend, Always good thoughts, Nancy
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Michelle,
Sorry for the high jack, Angie!
Totally empathize. It's ok to have pity parties. I will join in ANY time.
My smile was my trademark and I'm still p#%^@! 3 years later, and not ready to give up. >:(
You have good muscle tone in your pics from what I can tell, and half a smile is better than no smile, I guess.
Keep hanging in there and vent when necessary. Let's make a pity party post!
Who wants to start it?
Maureen
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I just had graduation with my kindergartens and of course the parents wanted photos and I agreed (not really wanting my picture). I got a copy sent to me from one of the parents and man I wanted to cry, i thought I was so much further along and then WHAM I see a photo and I look terrible - I am going to cry (not in front of my students). Yes life is good and I am thankful that I have recovered this far but seeing a photo makes me very sad - will I ever be back to the way I was?? Maybe I need to face it that I am not ever going to be the same again! :'( :'( :'( :'(
Harsh reality!
Michelle :'(
Hugs to you Michelle. I went through the same reaction after letting my pic be taken at Easter. I have been assured that the real thing looks way better than what shows up in a picture, but all the same, it makes me sad that I won't be able to look back on pics of myself at this age (I just turned 35) when I get old and be able to say "damn, I looked good". LOL
Vonda
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I have been assured that the real thing looks way better than what shows up in a picture, but all the same, it makes me sad that I won't be able to look back on pics of myself at this age (I just turned 35) when I get old and be able to say "damn, I looked good". LOL
Vonda
Vonda, I wouldn't be surprised if this turns out to be a misconception. I look back now at pictures when I thought I was chubby, and now realize that I looked very nice. As we mature we become a little easier not only on others, but on ourselves as well. I truly believe there will come a time when we accept how we looked as part of the process of becoming the person we are. I know I am a lot less distressed looking at pictures from last summer that horrified me at the time.
Sara
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I love when I hear that people are still making progress after an extended period of time. That gives hope to rest of us. ;D
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I also have a what-a-difference story. Today I picked up my daughter and two of her teammates from basketball camp at the University of Missouri. Last year she attended camp there as well. I was only a couple of weeks out of surgery. My face was all droopy, my eye was painfully dry and I could not tell what anyone was saying in the big auditorium due to diminished hearing on one side. I wasn't even able to drive myself.
Today I have symmetry at rest and a half decent small smile. (I noticed today that I can see a lot of teeth on the top, but the bottom lip does not pull down so my grin is still crooked.) I am quite accustomed to a permanent thin layer of Refresh PM on my left eye -- I don't even have problems driving with the ointment. And I had no problem understanding what the coaches were saying over the PA system. The only adjustments I have to make due to hearing is putting the phone to my right ear and occasionally asking someone to stay on my right side during a conversation. Other than that I'm good to go.
Until I attended the awards assembly today, I did not truly comprehend just how far I have come. Last year I was impaired on many levels. This year I am darn near normal. I can't wait to see what next June brings.
Sara
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I just noticed there was a new post on this thread and had to read it. I ended up reading all the post and had to update on my SMILE. In my first son's wedding pictures in May I had the same old AN pirate smile. But when my second sone got married on Aug. 7th I had a real SMILE! Ok, it's pretty small, but it's no longer the pirate smile. My therapist says watching nerve regeneration makes watching paint dry seem like an action adventure and she's right. But when the progress does happen it's soooo good.
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Angie
What an inspiration for others not yet posties. My goal post surgery is to water ski no matter how long it takes, as it is the one thing our whole family enjoys and I want to remain part of that.
Thanks again Angie and wishes in more AN improvements.
Kimbo :)
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Way to go, Angie! It is so important to celebrate the progress - and it sounds like you have much to celebrate! Keep smiling!
Debbi
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My goal post surgery is to water ski no matter how long it takes, as it is the one thing our whole family enjoys and I want to remain part of that.
Kimbo :)
Right after my surgery my girlfriend asked the surgeon if I would be able to water ski. She must have had a smile on her face because he immediately asked if I could water ski before the surgery (I never even tried). He was too smart to fall for that old joke. :D