Author Topic: ...and then it happened  (Read 17840 times)

oHIo

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...and then it happened
« on: July 26, 2008, 10:03:49 pm »
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.  ;)

sgerrard

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Re: ...and then it happened
« Reply #1 on: July 26, 2008, 10:12:59 pm »
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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

oHIo

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Re: ...and then it happened
« Reply #2 on: July 26, 2008, 10:24:16 pm »
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. 


Debbi

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Re: ...and then it happened
« Reply #3 on: July 27, 2008, 08:23:11 am »
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
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Omaschwannoma

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Re: ...and then it happened
« Reply #4 on: July 27, 2008, 09:06:04 am »
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!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

1wareagle

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Re: ...and then it happened
« Reply #5 on: July 27, 2008, 02:12:00 pm »
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 :)
Ellis- Age 50- Mississippi
3.2 cm AN Translab w/ BAHA Surgery
@ House Ear Clinic - LA - 01/04/07    Dr. Brackmann, Dr. Hilselberger, Dr. Stefan
Platinum weight in right eye-Dr. Roberts
Right side facial paralysis (slowly getting movements)

Jim Scott

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Re: ...and then it happened
« Reply #6 on: July 27, 2008, 03:08:49 pm »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: ...and then it happened
« Reply #7 on: July 27, 2008, 06:24:22 pm »
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 

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: ...and then it happened
« Reply #8 on: July 28, 2008, 06:37:44 am »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

cmp

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Re: ...and then it happened
« Reply #9 on: July 28, 2008, 01:15:59 pm »
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
5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

hruss

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Re: ...and then it happened
« Reply #10 on: July 28, 2008, 03:17:39 pm »
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
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

lori67

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Re: ...and then it happened
« Reply #11 on: July 28, 2008, 03:41:16 pm »
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
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

carlita

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Re: ...and then it happened
« Reply #12 on: July 28, 2008, 05:08:30 pm »
Hi. i was wondering if they cut the facial nerve or just touch it? ???
Carlita :)

LADavid

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Re: ...and then it happened
« Reply #13 on: July 28, 2008, 05:24:32 pm »
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
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

calimama

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Re: ...and then it happened
« Reply #14 on: July 29, 2008, 07:18:44 pm »
Thanks for sharing this positive news and congratulations on your progress.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.