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Author Topic: One-year (almost) post-op follow-up appointment at the Facial Nerve Center  (Read 7602 times)

saralynn143

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One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« on: May 12, 2009, 08:05:27 pm »
I posted this in LADavid's weekly follow-up, but I'm not sure everyone follows that so I will post here as well. When my actual anniversary (June 2) rolls around, I will take and post some pictures.

I had my follow-up appointment with Dr. Neely at the Washington University Facial Nerve Center in St. Louis today. At 11.5 months post-op, I scored 53 on his scale. I believe this would correspond with a weak III on the House-Brackman scale. Dr. Neely thinks that considering where I started, I have made excellent progress. I have symmetry at rest. My eyelid closes most of the way with the platinum weight, then drifts the rest of the way shut. Dr. Neely said he could see the muscle that holds the eyelid opening countering against the muscle that shuts the eyelid on the first attempt, but when I relaxed it was much better. He described my snarl as good, my smile as good except that the marginal mandibular muscle (I hope I remembered that correctly) isn't moving much so it is still lopsided. No movement in my forehead yet. Synkenesis is minimal.

I asked when I should consider starting physical therapy or facial retraining, and he said now is good. Someone will be giving me a call in the next few days to set that up. Dr. Neely does not need to see me for regular follow-ups anymore unless I feel I need one.

Interestingly enough, when I got home there was an e-mail from my neurosurgeon asking how I am doing. Excellent timing as I was able to make a good report.

Yay!
Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #1 on: May 12, 2009, 08:26:53 pm »
Sara -

thanks for the update.  Congratulations on the wonderful progress  ;D

I hope the physical therapy or facial retraining goes well.  Please keep us in the loop on this.

Good luck,

Jan
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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

EJTampa

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #2 on: May 12, 2009, 10:13:47 pm »
Although improvement is slow, it sounds like good news all the way around!  I'm with Jan, keep us posted about the therapy and "retraining".
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

sgerrard

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #3 on: May 12, 2009, 11:45:41 pm »
You forgot to say   pink . ;D

As long as it is improving, the outlook remains good. I hope your appointment for facial retraining goes well too.

Steve
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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.

arkansasfarmgirl

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #4 on: May 13, 2009, 12:26:26 pm »
YAY!
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Jim Scott

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #5 on: May 13, 2009, 03:15:49 pm »
Sara ~

Thanks for a pretty encouraging update.  At least progress is being made - and the facial retraining should help.  I think you'll eventually be victorious in your struggle to regain facial normalcy.  You know we're all rooting for you!  :)

Jim
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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.

mimoore

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #6 on: May 13, 2009, 04:30:53 pm »
Yeah Sara, We are surgery sisters - wow one year - hard to believe. I am so excited to hear things are going well.
Facial retraining has been great for me - let me know how it goes.
Hugs Michelle  :-*
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Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

saralynn143

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #7 on: May 13, 2009, 04:56:59 pm »
The physical therapy department called me today, but there a mix-up concerning exactly who I am supposed to see. The woman said she would get in touch with Dr. Neely and then call me back, but had not by end of business today. It's going to be hard to schedule once school is out and sports camps and such start up, but I'm sure we'll manage somehow.

Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Debbi

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #8 on: May 13, 2009, 05:24:17 pm »
Hi Sara-

Wow, can't believe you are coming up on a year.  Time flies.

It sounds like you are making good progress with the facial recovery; although it is such a slow process.  I'm at 12.5 months and I just started to get a tiny hint of movement back in my eyebrow.  I saw an NMFR about 4 months ago and have been doing exercises fairly consistently - hoping to minimize synkinesis.    I hope you are able to get scheduled with the therapist soon - if nothing else, I think it helps to feel as if you are taking control of your recovery.

Sending you good wishes.

Debbi
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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

Karen

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #9 on: May 13, 2009, 06:25:28 pm »
Hi Sara, I am the one in Illinois that had Dr. Neely and Dr. Custer.  I also had facial retraining at Wash. U. with a Renee  Ivens.  Let me know if you want some more information.  You can call me if you want to.  She was real good.  After her I am going to Jackie Diels in Wisconsin.  Renee did as much as she could.  Are you going to Chicago?  I am anxious to meet everone.  Karen
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Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

Kaybo

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #10 on: May 13, 2009, 08:06:02 pm »
Sara~
Good news!  I hope that you have MUCH success with the training - boy, I wish that they would have had that or that I would have known about that after my surgery!  ;D

K
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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!

saralynn143

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #11 on: May 13, 2009, 09:13:43 pm »
Quote from: sgerrard on May 12, 2009, 11:45:41 pm
You forgot to say   pink .

It's true; it did momentarily slip my mind as I basked in the pink of health.

I tried to find a Biblical reference with "pink," because that would make me appear simultaneously intelligent and esoteric, but the only references I could find were in the New International Reader's Version, with which I am unfamiliar, and appear in Leviticus, having to do with showing oneself to a priest concerning a skin disease. Ewww, gross.

Besides, I got complacent once you put me on your list. If you want me to continue, though, I would be happy to oblige.

Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

CROOKEDSMILE

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #12 on: May 13, 2009, 10:32:37 pm »
Sara,
SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO happy for you.
Love ya,
Angie
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nancyann

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #13 on: May 14, 2009, 08:13:59 am »
Sara:  I am so happy for you.    I've been in a bad mood lately due to my paralysis & dealing with all the continued issues;   knowing that you & others
are gaining movement back makes me feel so happy that others don't have to deal with this for long.
Congratulations again,   Always good thoughts,  Nancy
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2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

calimama

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Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
« Reply #14 on: May 14, 2009, 07:00:11 pm »
hey Sara...

I too am coming up on my 1 year (will do a longer post) and think I am paralleling your recovery (i don't have eye weight though). I will also start getting some kind of stimulation treatment (weekly for a month) in early June and will have exercises for homework. So far i have mild synkensis (but no snarl or chin dimple...just that my eye "smiles" when my mouth does, like it or not). The doctor also said now is a good time to start... I hope I can get some progress before the TWINS arrive (still tracking for mid July) as i don't know how i will do much else after that!

THanks for the update and hope you are feeling good about your one year anniversary.

Trish
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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.
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