ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: oHIo on July 26, 2008, 10:03:49 pm
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Hi everyone. I just wanted to share some good news. I had surgery on March 20th, woke up with full facial nerve functioning, then declined to a 6/6 on the House-Brackman scale at 24 hours. Needless to say, I was starting to get a little concerned at three months post op when absolutely nothing looked different. My fear was that my facial nerve had lost blood supply (I had an intracranial bleed twice during surgery, a clot on my facial nerve and a CSF leak) and functioning would never return.
And then it happened. On July 11th (I'll remember this date forever) I woke up and looked in the mirror while brushing my teeth and thought I saw just the tiniest bit of movement in the corner or my mouth. I didn't tell anyone, but had several people comment to me that my face looked better. The next day, I saw more movement and noticed my cheek had a little movement in it also. I am seeing improvement weekly and I am now four months post op and encouraged that something is happening.
In June, I had my first facial nerve evaluation and had scored the lowest anyone had scored at that facility. I must admit, that was probably the lowest point of my recovery. I saw the same rehab specialist on July 17th, just a week after I noted the first movement. My score in June was a 15 out of 100. My score in July was a 57. I was told by the time I get to the upper 60's, people wouldn't even be able to tell I had facial nerve issues.
My open mouth smile is symmetrical, although it is not as big as my usual smile. I see the ophthalmologist in two weeks and am hopeful he will reverse my tarsorrhaphy (eye stitched closed), so I can have some peripheral vision in my eye. I know I still have a long way to go, but I am encouraged to know my facial nerve still does work and I promise to try and exercise a little more patience in the process...maybe. ;)
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Cool! 8)
It is not every day that we hear about a no-function 6 recovering to a symmetrical smile in four months. Something makes me want to say don't push it - I think all that talk I hear about synkinesis - but mainly I want to say Woo-Hoo!
I'm pretty sure I would want my eye back too if it was stitched closed, so I hope you get yours back in two weeks.
Good news, and take care.
Steve
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Thanks Steve,
I'm doing my stretches and trying to keep my trigger points from acting up like the therapist showed me. I am careful not to overdo my exercises or push the limits, to avoid synkinesis.
I am realistic that this will most likely be a long process, but excited that I am moving forward with the knowledge that my facial nerve is still alive.
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I am SO excited for you!!! Please keep posting with updates. I am about a month behind you and to hear that you've got this much facial movement back is such a big motivator to me!!! Thank you so much for sharing.
Doing my best Happy Dance for you!!
Debbi, still waiting to get my smile back
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AWSOME news! Very happy for you and wishing you more healing as the months go by.
Debbi, hang in there no doubt you are wishing the same for yourself. Many blessings to you and may you begin to see healing very soon too!
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Debbi,
I just wanted to let you know that I did not get my first sign of a movement till my 8th month. I had given up hope when one day I say a twitch from my eye down to the corner of my mouth. With each day it has gotten a little better. I read somewhere that at 1 year that was probably all you would get back but it wasn't for me. Just this past week I got the ability to close my AN side eye without closing the good eye and it's been 1yr and 7 mts since my surgery. So don't give up!
Ellis
P.S. Now if I could just get back my forehead and lower lip movements!
Also congratulation on you movements oHIo :)
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oHIo:
Congratulations on the 'sudden' progress in your post-op facial function. I'm so pleased for you!
I admire your semi-cautious, realistic but rightfully optimistic approach to this development and of course, I pray that your facial recovery will continue apace. :)
Thanks for brightening up our day with this splendid news!
Jim
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Congratulations oHIo and Ellis -
and thank you to both of you for sharing this wonderful information with us. Your experiences will be a great inspiration to other forumites who have been battling these issues.
Hope the news continues to be good as time goes on ;D
Jan
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oHIo~
That is OUTSTANDING news!! I am so excited for you! We never got to talk on the phone - maybe we can get together now and chat & celebrate!! Have a super day!!
Ellis~
HEY! How are you? Glad you have gotten more of your movement back too!
K
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A symmetrical open-mouthed smile--WOW! That's just fantastic!
Thanks so much for sharing your wonderful news, and I hope you continue to see even more improvement. (And kudos on your ability to remain patient, which must be very very tough...)
Carrie
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oHIo, congratulations for your progress! it sounds very encouraging - i am still not facial paralyzed but i see myself to be so in 3 months.
then i will definitely need some advice on exercises.
judging from your name, your name, you are located in Ohio state, right? i would like to ask you if you had your surgery done in Cleveland, because i have a very good friend of mine there and he is searching some information from Cleveland Clinic about a possible future surgery for me there.
Ellis, well done on some of your movements back, too!
Best wishes to both of you on your advancement!
Hrissy
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Fantastic news! If you figure out how to make that patience thing work, let me know! :D
I think I would have been a real disappointment to your rehab person - on my first visit to mine I scored a 4 out of 100. Not exactly a grade you want to hang on the fridge! :D
I hope every day shows more and more improvement for you!
Lori
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Hi. i was wondering if they cut the facial nerve or just touch it? ???
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Hey oHIo
Great news. Congratulations. You're on the comeback trail. March 6 was my twitch day and I remember that excitement. But as it has already been said, from someone who eventually developed synkinesis, please be cautious. If an exercize isn't feeling right -- it probably isn't something that you should be doing. I don't know what caused mine, but I'm betting that if I had understood more about what was going on, I may not have developed it.
Enjoy your twitches.
David
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Thanks for sharing this positive news and congratulations on your progress.
Trish
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Hi. i was wondering if they cut the facial nerve or just touch it? ???
I think it depends on the location of your tumor. I've heard of some where they had to cut the facial nerve to get the tumor out, but I think they try not to do that if they don't have to. Mine wasn't cut but was really stretched out from the tumor and then having it manipulated to get the tumor off of it didn't help matters.
Lori
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A BIG thanks to everyone for the well wishes and sharing in my excitement. Just knowing my nerve was still alive was a good sign for me. I still have a long way to go, but this was a big step in the right direction, both physically and mentally.
Hrussy...I am in Cincinnati, which is at the opposite end of the state from Cleveland, but only four hours away. I had my surgery at the University of Cincinnati, which has two great neurotologists and several wonderful neurosurgeons.
Carlita...my facial nerve was intact. The tumor had to be peeled off the nerve and I was told my facial nerve was very stretched out and flattened, resembling a nerve usually involving a much larger tumor. My tumor was *only* 2cm, but was pressing on my brainstem and in a location that made a hearing sparing approach too difficult. I had 100% hearing discrimination, but had a translab approach. I've never quite done things according to textbook.
Lori...I'm not sure the score of 15 was accurate. I think he slipped in a few brownie points along the way because I had absolutely no movement in my face when he did the testing. It is very frustrating when your mind wants to make your face work, but the connections won't allow it to happen.
Debbi...I have been following your story and successes. Keep doing what you're doing and remember...patience grasshopper. ;)
My co-workers have noticed improvement in my face on a weekly basis. They don't see me from Wednesday evening until Monday morning, so they notice small changes even before I do.
I still don't do well drinking from a glass. A straw is my friend, but that's small potatoes in the scheme of things. Talking is still not symmetrical, mainly because of my lower lip, but I am adapting well to my Humphrey Bogart look. The Marty Feldman eye issue still exists, but I see the eye doctor next Friday.
David...My exercises are practicing very small, symmetrical facial movements as well as stretches and relieving the trigger points. I'm not sure synkenesis can always be prevented. It can be worsened by forcing muscles to work by overexaggerating the movements of other muscles (scrunching your face very tightly on the working side to try and make the non working side preform.) Hang in there buddy, you are an inspiration to us all.
Right now, it's the subtle changes I am celebrating. No wrinkles in my forehead on one side yet.
Debbie...secretly wishing for wrinkles ;) and impatiently practicing patience
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Debbie-
So good to read about your continued progress!
Just curious - do you find it challenging (ie impossible!) to eat things like sandwiches that require you to bite off a piece of the food? My lower lip always gets drug into my mouth along with whatever I'me trying to bite and I end up biting my lip. I am the only person in New Jersey who has to cut her pizza into little pieces and eat it with a fork! And, probalby the only person in the world who has to cut sushi!!
I think it is very encouraging that your co-workers are noticing improvements from week to week!! That's actually very exciting!
Really happy for you, Deb - keep the updates coming - you're my inspiration!
Debbi
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Debbi,
That is wonderful that you have some movement. I still remember my first movement. Three months and six days after my surgery. You do develop patience after a while. At least I have. It's been nearly three years now. Just this week I noticed that my nose finally has some slight movement when I flare my nostrils. My nerve was not cut. Probably the doctors took it out and stomped on it though!! My theory is that since it's still intact it will eventually work properly again.
I remember my first days of eating sandwiches and hamburgers. I needed a napkin for the bloodly lip I always got. One time I bit it so hard it swelled up for a couple of days. Now I don't bit my lip anymore even though I still don't have feeling on that side. I didn't even get good at taking small bites. So much for the weight loss! Even that didn't stop me from eating too much. :)
Here's to continued movement for all of us.
Jean
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Funny that this hits home right now, 32 months after my surgery. In 2005 I had late onset facial weakness, which was ostensively recovered after a few weeks' wait. But recently I am having difficulty getting my two eyebrow arches to be equal as they once were. And I get an itchy feeling on my temple and an occasional dry eye. Could it be that nerves are still repairing? I could end up with perfect eyebrows! :D
Ohio, your smile movement is wonderful news. I wish the very best for you and your facial issues. Jeanlea's post must be incouraging. You are both heros to us.
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Debbi,
Sandwiches, hamburger or anything big needs to be cut and I still bite my lip. I seem to always bite my upper lip though. I can get my mouth fully open but it seems that when I go to take a bite, my lip is still in the way. I have feeling enough to know that it really hurts.
I don't eat sushi, but I'd probably have to cut that up too. Even eating with a fork can be challenging as I manage to stab myself in the lip quite often. I am careful not to bend my head down too far when I eat or drink. I am becoming very good at removing stains.
Lori here's another AN marketing idea. Create a facial nerve palsy kit, complete with a fork, knife, straw, stain removal wipes and some gauze for the occasional bloody lip. Oh, and some extra napkins would be nice. ;)
It has been good to look in the mirror and actually see teeth on the right side of my mouth when I work hard to smile. (Not too hard though...don't want synkinesis) I still have to think somewhat about moving the right side of my face, but it is definitely moving. There's not as much drag when I talk. It's just really great to see a part of the old me coming back to join the new me.
Boppie...you've been a wonderful source of encouragement throughout my AN journey. The next time we meet, I hope to look very different than when you saw me at 6 weeks post op.
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oHIo~
I LOVE the idea of the kit for the garage business - I know I need one! I am a master at stain removal!! So excited for you!!
K
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Another great idea!
I find myself grabbing extra straws from everywhere I go that has them to keep in my car or my purse! And I always ask for extra napkins when we go out - although I usually make it seem like I need them for the kids instead of for myself! ;) Maybe I can swipe some extra lobster bibs from Red Lobster to include in the kits?
I can't usually manage to get a sandwich in my mouth, but I have mastered eating pizza without a knife and fork! You just have to aim it towards the good side - and have those extra napkins handy. I feel I've given in enough just drinking my coffee with a straw - I just can't bring myself, being Italian and from New Jersey, to eat my pizza with utensils! Debbi - you'll understand this, I'm sure. :D
It is very frustrating when your mind knows what it wants to do, but your face just doesn't cooperate. Who knew it was possible to break a sweat when exercising your face?
Lori
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Congratulations oHIo!
I wanted to pass on that the father of a friend of mine had an AN removed 25 years ago. After surgery he awoke with full facial paralysis on the AN side, unable to close his eye. Over the next FIVE years, he regained nearly complete facial movement. Clearly in his case, one year was not the end of nerve regeneration. I m hoping and praying for your continued progress!
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Note to Lori -
we need to spend some serious time developing all the great ideas on this forum! In addition to oHIo's face kit suggestions, we could add K's stain remover. Eureka! There may be BIG money in this - for all of us!!! :D
I say you talk the husband into watching the kids and you and I will retreat to some spa somewhere to work on this. A nice, quiet place should be just what we need. ;)
Yes, I know you don't have the money for this much-needed spa vacation - er, I mean, business trip - neither do I. We'll just ask the moderators to help fund it :D
Jan
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Maybe we can apply for some sort of research grant to pay our expenses. It is all in the name of science, you know. No personal gain to be had for us. ;)
Lori
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Personally, I'm going to buy stock in a napkin company. I've trained Willie to let me know immediately when somethign ends up on teh outside of my mouth - which seems to be all too frequently. I'm thinking of getting a burka. >:(
Hey, Lori and Jan, maybe you can add disposable burka's to the "gift kit" for the "facially challenged"...
Debbi, ready for the burka
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Maybe we can apply for some sort of research grant to pay our expenses. It is all in the name of science, you know. No personal gain to be had for us. ;)
Lori
Lori,
With the right wording, you can get a grant for almost anything. Remember the cow flatulence study showing how the byproducts of cows severely affected our ozone? :o
LA David could be our grant writer (and add some Hollywood flair) and we could have Jim throw in a few fancy words so no one really knew what we were doing. ;)
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oHIo
Got a good laugh out of that one. Jim with his technical way of putting things and me with my purple-prose way of putting things would definitely confuse the grant granters into submission. It would be sort of like a McDonalds House thing for ANers. Or maybe like a halfway house. Only our place would be on some lake with a bunch of rocking chairs (vestibular therapy), an endless supply of napkins (Debbi), a weekly pirates day with an endless supply of rum, stategically place dictionaries for those moments of word loss, and a self-proclaimed every day is wonky-head day. And of course the exclusive right to tell non-ANers -- "Be thankful, at least you're alive."
AN Nirvana.
David
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David -
your post is even funnier than oHIo's. (Lori, we've got to put David on our payroll ;D )
I think the pirates day should be more often than weekly though!
Jan
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Jan
By making pirates day one day a week, I was merely trying to provide the pretense that our staggering is strickly a result of the dreaded wonky-head. Heaven forbid the medical profession catch on to the fact that most of us are rum-soaked fish-hatcheryites. They would have a field day disavowing wonky-headedness. But what the heck, let's make everyday Pirate Day. Let the rum flow.
Jan? Lori? Payroll? Does it pay more than my incredible ANA Forum payroll? Talk to me. Let's keep my agent out of this. I am quite sure she doesn't lurk on this board. Jessica? You don't lurk do you?
signed - some anonymous former actor
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Dear anonymous former actor -
I was literally laughing out loud as I read your response.
If it were up to me, I'd pay you a huge salary with no cut for Jessica. No offense, Jessica ;)
I'm confident my business-partner/partner-in-crime Lori would agree.
Jan, your fellow rum-soaked fish-hatcheryite :D
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Maybe we can apply for some sort of research grant to pay our expenses. It is all in the name of science, you know. No personal gain to be had for us. ;)
Lori
Lori,
With the right wording, you can get a grant for almost anything. Remember the cow flatulence study showing how the byproducts of cows severely affected our ozone? :o
LA David could be our grant writer (and add some Hollywood flair) and we could have Jim throw in a few fancy words so no one really knew what we were doing. ;)
there is a grant out there somewhere for this ... have a cousin that got a grant to study the sex life of some New Mexican lizards to figure out why their numbers were declining... :o ... $35,000 a year in government money for four years back in the mid 1980s... she didn't find a way to get the lizards to be friskier and procreate , but the money paid for a house in the desert and food in her stomach as she collected a filled aquariums with the little critters ... she now raises heritage sheep and geese for wool ,down and meat in the mountains of Colorado ...
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Lori & David -
I say we contact Soundy's cousin ASAP!!! :D
Jan
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All for it, Jan. But I'm sorta guessing that Judy already researched this stuff. But what if she didn't and there's untold billions, maybe even hundreds waiting for us to latch onto to build AN World, a magical kingdom where the rides go slow and don't spin around making you dizzy. Featuring the greatest ride of all, the Wonky-Head where you don't do anything but stand there and let your brain to the rest. And where all the food won't have any taste cuz we can't taste it anyway. Ah the dreams. If there is this vast treasure trove, I am quite sure Judy would let us have it because she knows we wouldn't do anything silly with it.
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There would have to be a chocolate booth as too many females are here. We can't live without chocolate!
We are going to the Iowa State fair this Thurs. We go every year in spite of my interesting walking at times. I will count how many people 'bumps" I do. I am sure some will imagine I just had too much to drink. We avoid the weekends as is too crowded then.
They are letting people in free the first day before 8 am and are going to have a event soon after to have the most corn dogs ate at one time. I love them but my husband has never ate one but will be Thurs!
Cheryl R
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Jan & Lori~
Hey! I'm in on the research/development (at the spa) trip! I think we can get the MOST work done in Maui or Cancun - it is just the most condusive to "research..."
K
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K -
I'm voting for Maui - went there pre-children and it was beautiful! I need to go again before I die :D
Although, at this point, Cheryl's trip to the Iowa State Fair sounds pretty promising too - and I've never been there before!
Maybe David could write me a grant request for funds to see if corn dogs have any affect on deafness caused by AN's and I could spend my time at the fair researching that topic 8)
Jan
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Jan
Ugh on the corndogs. If you want some really good corn eating, try the Orange County Fair -- 30 or so miles south of me. They have incredible roasted corn smothered in butter. I'm considering going there for the corn -- oh yeah -- and to see Sammy Hager -- actually more for the corn. I am absoluteluy sure there is a grant somewhere for corn eating and Sammy Hager partying. It goes along with that mystical AN kingdom.
And Jan and Kay -- cut down on the travel time and take Cancun or the Virgin Islands. After the first or second portion of rum, you won't know where you are anyway except in the sun listening to reggae and the surf. Been there -- both places.
David
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David -
you're probably right on the corndogs - actually I've never eaten one in my life. I should probably wait to see what Cheryl's husband thinks of them before I commit ;)
Rum, sun, surf, reggae? I'm there. Have you booked my flight yet? ;D
Jan
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David~
We have been to Cancun several times for that very reason - we can get there so much faster and have more time to relax!!
K
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Oh my goodness, I'm far behind here...
Ok, first of all, David, I will gladly put you on the payroll. Unfortunately, your first check has already been earmarked for the rum fund, so you won't actually see any cash for a little while. You understand... :D Jan can give you a personal loan if you need it - I hear she's loaded. With money, not rum. Well...maybe both.
And I'm in for the trip to anywhere there's a beach, palm trees, water, sand and boat drinks. Maybe we can research the effects of sun on AN's? The use of sand in vestibular therapy? The use of Rum Runners in vestibular therapy?
And let's not forget the chocolate!
Lori