facial nerve transfer

[alot2learn]

I am new to all this and was wondering about the facial nerve transfer ( 7-12) from individuals who have had the procedure. I know every out come is different, but what did you go through in therapy and what do you have to deal with on an everyday basis. The doctors thought I had an AN, but when they operated it was a Schwanomma that was on my facial nerve. Since I have had a gold weight implanted in my eye lid even though my eye lid still does not close all the way (almost) it something I am learning to deal with.  Well any info would be greatly appreciated.  the doctors say that I need to have the surgery before a year is up for a better chance for the nerve transfer to work so I have about 10.5 months left.

[Kaybo]

Hi & Welcome!
I'm a bit confused because I read your post that you have about 10.5 months LEFT - does that mean that you just had your surgery a month and a half ago??  If you have had ANY movement what so ever - do NOT do anything yet.  I know that they say that most healing that is going to happen, happens within the 1st year, but many people on here can attest to the fact that movement is gained MUCH after that period!  I did have the 12/7 (12 years ago when it was still very new) and then went on to have the T3 last year.  I never had any movement whatsoever...I would be more than happy to talk with you about the procedure.  Please let us know a little more about your situation.

K

[Jan D]

Hi - It's been awhile since I've sent a post, but I'll chime in here just in case it might help.  I agree with K that you should wait at least 12 months or more before you have anything done, for several reasons, one of which is that you may get movement on your own without another surgery.  My AN was removed over 40 years ago before all of this terminology that you read on this website was known, therefore, I was never really told which nerves were damaged in the way of numbers.  I do know that my facial nerve (the 7th nerve as we now know it) was completely wrapped around the tumor, which left the doctors no choice but to sever it in several places.  They doubted whether or not it would grow back, but they waited 18 months before doing the facial anastamosis (now called the 7-12 nerve transfer).  I am so glad that I had it done.  I regained some movement, not enough for my liking, but it was better than nothing.  The T-3 transfer was not even an option back in the 1960's.  I'm too old to go through another surgery, but the T-3 is certainly worth exploring after 18 months or so IF YOU HAVE NO MOVEMENT.  If there is any movement at all, there is always hope for improvement.

Best wishes,
Jan D

[alot2learn]

My Surgery was April 13, 2009 & it was a lil bigger than the size of a golf ball.  Once they opened me up they noticed that it was growing off of my facial nerve so they had to cut it to remove the tumor.  They were able to remove approx.  99%.  I have no hearing in my Right ear, & paralysis on the right side of my face. Before surgery I had 100% movement of all facial features.  According to the Dr.'s at MD Anderson I have up till a year from the time of my surgery to get the Facial Nerve Transfer performed. They specified that once the year is up the nerve endings begin to die off & transfer is not an option b/c it will not take.

[moe]

Hmm, that is interesting.
-I had the 12/7 surgery 18 months ago this July. I was told that the latest you can have it is up to two years post brain surgery. I too had my facial nerve cut. It was directly re-anastomosed during the initial brain surgery, but did not "take."
Since the 12/7, I have had some function return to the cheekbone area and I'm able to move some of the left sided muscles. Not enough muscle movement in the cheek and upper lip area. Still can't smile.
I'm hoping for more surgery. I go to UW in Seattle, and they have a facial nerve clinic that I hope I can get transferred to after follow up for my 12/7.
I'm also hoping military insurance will cover!
Anyway, all doctors have different opinions, so if you have no movement and there is no hope for any, go for the 12/7. If THAT doesn't work there are always other options.
Who knows, maybe I waited too long on my 12/7.
Lori had great results with hers.
Lori where are you?I know she is moving this summer, so may not be on line as much.
The 12/7 surgery is a piece of cake compared to brain surgery.
Would love to share more details about my surgery, if you go that route.
Maureen

[lori67]

Hi!  Sorry - a whirlwind of activity over here lately!  Phew...

Anyway, I had my 7-12 at 18 months post AN surgery.  I was told to wait until at least 12 months to see if anything was coming back on it's own, and it wasn't.  I still wanted to wait, so we pushed it to 18 months.  So, at the end of last September, I had it done.  I was told I wouldn't notice any movement until the 6 month point, but at 3 months, I started to get some movement back and it's still coming along.

It's not great, not what it was pre AN surgery, but it's so much better than it was before.  At rest, my face looks symmetrical and "normal".  I'm doing PT now to work on getting the muscles around my mouth a little stronger so it looks more natural when I speak, and still working on the blink, but there is a flutter of movement that wasn't there before.

There may be a preferred time to do the transfer when your nerve has actually been cut.  Mine was not, it was just so stretched out, it wasn't going to get any better without a little help.  The fact that yours was cut might make it a different story.  I would ask the doctor his reasoning for his time table.

Like Moe said, it was a simple procedure (for me anyway..maybe not for the doctor!).  I would do it again if I had to and I'm happy with my decision.

Have you gone to any PT yet?  I went for a little while before my 7-12 - that's how we determined that it just wasn't going to happen for me without a jump start.

Good luck!
Lori
p.s. to Moe - Tricare just denied my request for PT - after they sent me the referral authorization for 26 visits, of which I've already had 3.  Now I have to write them a letter with medical documentation to get them to pay.  Yeah, I have time for this right now!  They say that PT is not recognized as an effective treatment for Bell's Palsy.  Well, that's great to know - I don't have Bell's Palsy!!!!  And, as a PT, I happen to know that PT is quite effective at treating Bell's Palsy!  UGHHHH!!!

[petittrv]

I had the 7/12 done one week after the tumor removal.  Not sure why it was rushed based on reading the other comments but I didn't really do a lot of hiomework.  Medical issues just never really got me interested - I just went with what the doctors told me.  That being said, I am 50/50 on if I would have had iy done knowing what I do now.  I am only 20 months post-op but having this half-useless tongue and only getting the little bit of "tone" on my AN side usually doesn't seem like an even trade (especially when I'm eating). 

I'm not recommending either for or against but you are certainly doing the right thing by asking the expetrs here.  My suggestion is to read all your responses, bring any questions that arise to your doctor and then post his/her replies here for some more scrutiny.  You've got the time - use it wisely.

Good Luck