Dealing with facial immobility

[rosie_p]

Hello everyone! This is my first post, as I just joined I had by surgery in 06 and like a lot of you I "woke up" with paralysis.  Gotten much better and I can smile a closed mouth smile okay but open mouthed is troublesome.  Immediately following surgery I felt like a warrior and had no problems/hangups about my face and proudly wore it like a badge!  Now if someone I encounter even looks at me a little strange I turn into a blubbering mess and assume they are reacting at my face.  I have just begun neuro-musc-retraining with accompanying botox and now that I am finally getting things accomplished I am in complete panic/dispair/depression about what might or might not lie ahead.  It's ironic to me that now, having dealt with it for so long it is bothering me.  I applaud all who have endured this!

[Kaybo]

Hi RosieMarie and Welcome! 
Glad you found us!  Please feel free to let us be your sounding board or if you just need to vent!  I have been paralyzed (complete) now for over 13 years - I have been lucky in that I have a WONDERFUL support group around me (& I guess i realize now after all these years, a little God given internal strength) that it truly doesn't bother me...maybe someday when I have time to stop & think about it!    However, I know what a struggle it can be and most folks have a LOT of peaks and valleys - that is OK as long as you are determined to come out on top!!

K 

[moe]

Hi RosieMarie and Welcome,
It's true about being the warrior right at the beginning because hey we survived brain surgery right?
But I find, living with it day after day after year gets a bit old. It still personally bothers me because it affects my speech and my eye is always a bother with the weight.
Did you have  your facial nerve cut?
I still haven't reached the closed lip smile phase. The doc wants to wait 6 more months to see what my face does before he does more surgery stuff (I had the 12/7 nerve transposition 18 months ago).
Anyway, good luck with your journey.  PM me anytime. There are a number of us with facial issues as you can see.
Also looks like you are still relatively young.
Keep the spirit and humor! And congrats on the closed lip smile
Keep truckn,
'Maureen

[rosie_p]

Nice to meet you Moe and Kaybo! Thanks for the words of wisdom/encouragement.  You ladies are so strong and inspirational! I'm sooooo glad I found this site and cant believe I didn't sign up earlier!

[Kaybo]

Rosiemarie~
I am 39 so we are "relatively" the same age...I had my tumor removed when I was 25...I would love to chat with you on the phone if you would like.  I have unlimited long distance so i could give you a call if you want to PM me your number!

K

[nancyann]

Hi Rosiemarie:  I have complete paralysis on the AN side also,  never got any tone/movement back (also had surgery in 2006).
I was just the opposite of you - I was so depressed with the paralysis until I had the T3 surgery (my before/after pictures are under
Facial Issues: Post Temporalis Tendon Transfer - today it's on pg.3 of facial issues - but that does change).
I AM happy that you can do a closed mouth smile & are having retraining & botox.  Don't give up - there are some on this
forum who have seen results 3+ years after surgery.
& if you feel in a year or so (or whenever) you want other 'work' done, just google Dr. Patrick Byrne, he's at Johns Hopkins
& he gave me my face/smile back ! (my depression lifted after the T3 surgery)
I know this is a tough journey, I tell you, it made me much stronger !
Always good thoughts,  Nancy

[4cm in Pacific Northwest]

Welcome Rose Marie!

DHM

[Kaybo]

Rosie Marie~

LOVED talking to you today - look forward to chatting again!  Nancy is the one that told me about Dr. Byrne - we both just LOVE him!!

K

[nancyann]

& 'Pattibobatti' told me about Dr. Byrne !
Great how this forum works, isn't it ?

[moe]

Yea, way cool forum.
Speaking of facial immobility, I had my 18 month follow up for my nerve graft and had discouraging news.
Was going to start a thread, but I'll just mention here.
I am so depressed because the doctor saw my upper lip barely twitch when I  squeeeeeezed my eyes shut (the left one doesn't do so voluntarily).
I was hoping for the next phase- some type of lift.
But no he was sooooo excited to see the twitch and sign of synkenesis, and told me to come back in 6 months!
I know I'll feel sooo much better if I can get some surgery. I still have to be patient..... I'm tired of being the patient patient!!!!
I've had the facial paralysis for 3 f!@#ing years now. Granted there is movement on the left side of the face, but nothing around the cheek/upper lip.
I'm looking into acupuncture.
I cannot just sit here and wait 6 more months!!!!!!
I'll check some posts on acupuncture. I live near Seattle and need to do something.
I am feeling more tingling on the left face, but face it, it has been 3 years since the original brain surgery with nerve to nerve anastomoses and then the 12/7 graft. I don't really forsee a whole lot happening in 6 months.
Any ideas?
OK I feel better.
Thanks ladies.
Maureen

[CROOKEDSMILE]

Maureen,
You don't have to listen to the doctor's advice if you don't want to. Most doctors are too optimistic and don't understand that after 3 years..............hello........it might be time to move on to something else. I understand your frustration. Get a second opinion maybe even go ahead and make the appointment with the doctor that would do the lift or whatever procedure that you are interested in next and see what he thinks. You deserve it. Don't wait if you don't want to. I think 3 years gave your face a fair shot at doing what is was going to do and I personally would schedule the next best thing but then again this is coming from someone who had surgeries (i.e.plastic surgery) 15 months after my paralysis. I'm not one to wait. Do what makes YOU feel good. Keep the faith and get another opinion.
Angie

[4cm in Pacific Northwest]

Moe,

The neuromuscular facial re-education clinic with Dr. Ng and Wanda Crook (from San Diego) at OHSU (Portland OR) should be up and running in the next couple of months- here. There is just some last detail typical “university bureaucratic red tape” they are having to get through.

I will post under “facial” once I receive word they are receiving and registering patients.

"SEATTLE" (thanks Steve)  is a very doable drive from Portland. Tentatively our next Oregon ANA support group meeting (to which lots of Washington State people come to- and some are now carpooling) is booked at St Vincent’s for September 19th. I am sure it will be posted
http://www.anausa.org/scheduled_meetings.shtml
...as soon as all is confirmed with the leaders and the ANA etc.

I do not blame you for getting impatient… (Oh I can relate- this facial palsy is no walk in the park is it?)

Cyber HUGS

DHM

[sgerrard]

Portland is a very doable drive from Portland.

Also very doable from Seattle.

Steve

[4cm in Pacific Northwest]

"SEATTLE"- OK OK I goofed.     I modified it in red. Thanks for your good editing skills there Steve.

DHM

[moe]

Thanks Angie and DHM for your feedback.

I'm in an awkward position, in that I am military. Got Tricare  to OK the 12/7 at UW because my doc at Madigan I guess didn't want to do it or hadn't done very many of them.
So my referral to UW was for a lift of some sort but Dr. Rubenstein wanted to try the 12/7. Which we did. And he is still watching..... Doesn't quite want to declare defeat on this procedure-bad for the ego

So I'm "in the system" there and they have awesome surgeons. That's why I'm probably going to wait the six months and maybe try some acupuncture now to move things along. But oh so frustrated.
If he doesn't refer me to a different surgeon, then I may end up back at Madigan. They may have a surgeon there now who does the lift (He was transferred to HI when I had my original follow ups).
So gotta go with the systems. It all works out one way or another, as we know.......
They have a facial nerve clinic at UW  which he did not even mention but then again I didn't mention it . I'll try an email to him....and see how to get tricare to cover that.
I was just there but just was in a fog and a funk and didn't even think to check it out!
Anyway, thanks for the info on the  neuromuscular facial re-education clinic, DHM. Hope to meet you guys in Sept. I'll put it on my calendar.
Maureen



Hoping I can get to the sept one in Portland.