ANA Discussion Forum

Post-Treatment => Facial Issues => Topic started by: saralynn143 on May 12, 2009, 08:05:27 pm

Title: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: saralynn143 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: leapyrtwins 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: EJTampa 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: sgerrard 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: arkansasfarmgirl on May 13, 2009, 12:26:26 pm
YAY!
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: Jim Scott 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: mimoore 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  :-*
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: saralynn143 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: Debbi 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: Karen 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: Kaybo 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: saralynn143 on May 13, 2009, 09:13:43 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: CROOKEDSMILE on May 13, 2009, 10:32:37 pm
Sara,
SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO happy for you.
Love ya,
Angie
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: nancyann 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: calimama 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
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: saralynn143 on May 14, 2009, 08:04:09 pm
Trish, how did I miss the news about TWINS? Boys? Girls? One of each? I'm so excited for you!

Of course, we are surgery twins, or triplets if we count Michelle two days later, and I definitely think we should.

Sara
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: Kate B on May 14, 2009, 08:21:50 pm
.... After her I am going to Jackie Diels in Wisconsin.  Renee did as much as she could. 

Jackie Diels is supposed to be very good!
Title: Re: One-year (almost) post-op follow-up appointment at the Facial Nerve Center
Post by: saralynn143 on May 14, 2009, 09:06:58 pm
Well, I sure hope to talk with Jackie Diels in August if at all possible.

Still waiting on that call from Wash U.

Sara