...and then it happened

[lori67]

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

[oHIo]

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

[Debbi]

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

[Jeanlea]

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

[Boppie]

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! 

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.

[oHIo]

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. 

[Kaybo]

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

[lori67]

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.   

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

[ColoradoGal]

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!

[leapyrtwins]

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!!! 

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 

Jan

[lori67]

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

[Debbi]

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

[oHIo]

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?   
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.   

[LADavid]

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

[leapyrtwins]

David -

your post is even funnier than oHIo's.  (Lori, we've got to put David on our payroll  )

I think the pirates day should be more often than weekly though!

Jan