what are my options?

[Jeff]

Hello,

I have total paralysis on one side that I do not expect to get better. I am considering having surgery again to get an auditory brainstem implant. I am thinking that it may make sense to have a 7/12 graft or have my facial nerve reconnected during this surgery.

I wold love to hear your opinions and experiences.   

Jeff

[4cm in Pacific Northwest]

Jeff,

Wow I am SO impressed you would consider more surgery after all that you have been through.

NancyAnn shared this (link below) with us in one of her threads. You might want to contact her vie e-mail.

http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php

She will be having her surgery this month… and I’ll bet did hoards or research before she made this choice. She may be a good buddy to you (as you were to me. )

You need to know that there are people on this forum who respect, admire and honor your opinions and ideas no matter what your face looks like. It is who is on the inside that really counts. Even though our communication is only in text form and you cannot hear my voice intonation – please know it is sincere when I tell you that you are an amazing person - Jeff.

My morning routine of listening to my favorite Mozart CD  while I putter is no longer, post surgery, as music in my good ear makes my deaf ear resonate with tinnitus. Finding new ways to my daily life and routine are a challenge and then I think of your amazing vocational retraining story and I am so inspired to “keep moving forwardâ€? and I do find new ways to enjoy life.

Here is a link for the readers who do not know what an AUDITORY BRAINSTEM IMPLANT (ABI) is (like me for example)
http://www.earinstitute.org/news/facts/abifact.htm

I am sure many of us readers will be curious to see what people answer to this excellent question. I am an impatient patient as I wait for my face to return ... however I know many are told up front that thier palsy will never resolve... due to permenant injury in surgery.

Cheers,

4

[nancyann]

Hi Jeff:  Yes, 4 is right, I am having the 'temporalis tendon transfer' surgery at Johns Hopkins with Dr. Patrick Byrne 11/20, & I can't wait.   
I've had total paralysis, right side for 16+ months, & have had enough!!    This is a pretty new procedure, & as you can see it gives a much more 'normal' appearance.  I'll still have the paralysis, but this surgery helps give a closed mouth smile, is suppose to help also with eye issue & helps open up the paralysed nasal passage.
If you google 'temporalis tendon transfer', you'll see a few papers on it (not to be confused with temporalis muscle transfer which still left people with facial asymmetry).
I was told by my neurologist (& by Dr. Byrne), that after having the paralysis this long, my chances for a nerve graft taking aren't as good, & also, the older you are, the less chance of it taking.   My facial nerve was cut & a primary anastamosis done at time of surgery, but it hasn't shown any signs of regenerating to the point that I have movement, or that the tone will improve.
So, that's that.     Hope it helps you some with your choices.....
Always good thoughts,  Nancy

[Jeff]

Thank you Nancy. And best wishes on your upcoming surgery. Any surgery that I would have would necessarily be at House, since I would want to get the ABI (Thanks 4 for posting the link).

At this time, I am exploring options. And, this could all be moot if my upcoming MRI shows that my brainstem has been damaged by the stroke that I had in April. The fact is, it is hard to function and do the things that I want to do when I can hear nothing. I have three goals that cause me to even consider surgery. First, I want to be a better spouse. Communication is tough now. Second, I want to be a better parent to my 8-year-old. And third, I want to be better able to communicate at work. And, I figured that, if everything works out andI decide to do this, that they may as well try something to help my face to function better while they are in the "neighborhood." So, this is what prompted me to pose the question about options. I thank you all for your input and encouragement.

Jeff