new member- facial reconstruction after surgery questions

[flgi]

Hi

I'm  a new member here- have been lurking for a while, but have decided to join. I'm from Oxford in the UK.

I'd really like to ask anyone who has had facial reanimation/reconstructive surgery about their experiences.

My 63-yr old mother had surgery for a suspected AN last September. However, they aborted the operation as they found it was a facial nerve neuroma and couldn't take any out without cutting the facial nerve. They hoped to be able to treat it with Gamma knife instead, but the surgeon said that because it was cystic, the cysts were likely to grow.
It's been quite a saga over the last year but the upshot is that she is now due to have surgery again and this time knows that she will have her facial nerve cut. Quite a daunting prospect.

Anyway, I was just wondering what the options were. What are the statistics for the success of the 7/12 nerve graft anamatosis? And , if this doesn't work, what are the options?

I've read about the temporalis tendon transfer -and wondered: are the effects permanent? or do you have to have it redone every so often. Is this the T3 surgery?

Also, anyone out there with a facial nerve neuroma that has NOT had had the nerve cut?

Thanks so much. These forums are really useful.

Flora

[Omaschwannoma]

Do a "search" for member "nancyann" she can help you.  Her facial nerve was cut and had tendon transfer as well as someone else (I'm sorry "someone else" memory problems) on this forum.  They can stear you in the right direction.

[nancyann]

Hi Flora, nice to meet you.   I had the T3 surgery you mentioned.   You can see my pre/post op pictures under Facial Issues, Subject: Post Temporalis Tendon Transfer.   I am very happy with the results,  & even though for me it was a rough 10 hour surgery ( I also had a facelift, eyebrow lift, & eyelid surgery), I would do it again in a heartbeat.
If you google 'acoustic neuroma' you may find (as I did),an article with a picture of a woman from the UK (Bessy I think is her name) who also had the T3 surgery.
My face is still paralyzed,  but the 'droop' is gone, & when I bite down on the AN side, I have a 'Mona Lisa' smile.
I was told by Dr. Byrne (T3 surgeon) that I may need some 'tweaking' down the road,  fine by me.

So, that's my T3 story in a nutshell.    Always good thoughts,   Nancy

[flgi]

Thanks Nancyann and Karen

Nancyann- the pictures are really good. I think I read that you had the 12/7 nerve graft originally but it didn't work? I'm just not sure what to expect from this graft for my mum. Oh well, probably worth a  try...and then good to hear there's something else down the line.

How have you coped with the problems that come with facial palsy? Also, strange question but when you smile on one side, do you still feel that you're smiling. My mum currently has a mild facial palsy which means she can't smile-she got this just from prodding in the original op - they didn't even take an of the tumour away..

I went to the UK AGM of BANA - the British version of this site-  this weekend and it was heartening to see people with severe facial palsies still being able to talk and eat ok. I had really worried about this
Anyway, thanks for the advice. So few people seem to have their nerve cut these days that it was hard to find someone on the British site that has had this

flora

[nancyann]

Flora:  I decided not to go the route of 7/12.   I was so scared to have any surgery on a nerve again, + I was a smoker, & was 51 y.o. at the time.
As far as coping - you do what you gotta do to survive & figure out what works best for you.   Returning to work was the hardest part for me (heck, going out in public wasn't much fun either), but it got easier every day.   Now, with this T3 surgery, I feel like my old self again.   I still have to do eye & mouth care b/c my face is still paralyzed.    I don't feel a 'smile' like I use to, but I can tell there's a 'pull' in my cheek on the AN side when I bite down to smile.

Always good thoughts,    Nancy

[Cheryl R]

Flora, I had a facial neuroma in 2006.     I had translab surgery and the nerve did have to be cut.    My surgeon then during the surgery took a small piece of nerve from farther down the incision below the ear in my neck and  grafted it to the facial nerve.    I recovered like the regular translab surgery.         It took around 9 mos but my facial paralysis did improve and I look normal to look at me.         I only have some movement but  could have been much worse.          The nerve they used for this is called the aural nerve.                I have some numbness of the ear but it has improved a little since the surgery.             I was told before the surgery that this is what the surgeon would do if the nerve did have to be severed.                              I live in the midwest US and go to the University of Iowa hospital.                     I wonder if there is any surgeon or neurotologist in the UK who is familiar with this?
                                                   Cheryl R

[leapyrtwins]

Flora -

K (Kaybo) also had T3 surgery quite recently.  You might find her posts very helpful http://anausa.org/forum/index.php?topic=6157.msg57889#msg57889

Jan

[tony]

Sorry I missed this one - John Radcliff Hosp (Oxford) does quite a good
rebuild option in the plastics unit (Dr Johnson ?)
Basically where there is no nerve the upper or lower jaw muscle
can be deployed to give support and some movement
No steak sarnies for a month or two
but otherwise its a "cake walk" no pun intended...
I am from reading - oxford did the smile surgery
Best Regards
Tony

[Kaybo]

Flora~
Your mother is so lucky to have a daughter like you seeking out the best path for her!  I had the T3 at the end of March - I had the 12/7 11 years ago.  It was somewhat success (regenerated my face) but the T3 seems to have MUCH quicker results - they might not last as long - & we really don't know since it is so new, but like Nancy, I am willing to do that.  Please feel free to ask any specific questions!!

K

[ppearl214]

Hi Flora and welcome! I have spent time in Oxford and love your area!

I'm glad to see NancyAnn  and others are chiming in with the assistance you seek re: your mum's situation..... I just wanted to extend a "welcome" to you and your mum and glad to have you here.

Phyl

[jazzfunkanne]

Hi , i am from the uk too, there is a girls story in the BANA (british acoustic neuroma Ass.)mag this month who had a nerve graft and her face looks great. email me and i will sent you the stroy. ps there is another girl on the bana site called jacque who  also had the nerve graft (in italy), and alan (jackeys husband).

[lori67]

Hi Flora.

I'm scheduled to have the 7-12 surgery in early October, so I'll let you know how it goes.

I saw my eye surgeon today for a check up and he said that every one of his patients that's had the 7-12 done did improve after the surgery.  My surgeons group always refers their patients to the same guy, so he's seen quite a few patients and they've been very successful.  I'm keeping my fingers crossed that I'm not the one to ruin that track record.

Good luck to your Mom - or Mum, as you say over there!   

Lori

[Gloriann]

I had the 7/12 nerve graft done 14 months after my tumor was removed.

 My facal nerve was not severed during my tumor surgery, so for the following year my doctors told me they expected the nerve to regenerate. My face was paryalysied on that side where the surgery was done and the nerve never did regenerate, so my doctors told me the paralysis would only get worse if I did not have the 7/12 nerve graft done and that it should be done before we reached about 18 months after the acoustic neuroma surgery. If you wait too long the muscles go into something they call atrophy, from not being used and then a nerve graft does not work, is what I was told.

I was very reluctant to have more surgery done, but after looking at a picture of myself made 6 weeks after the tumor surgery, then looking at myself in the mirror, I could see that my face had gotten worse during that year and not better. Not only was the left side of my face drooped, but my mouth had twisted to one side.

I had the 7/12 nerve graft done and do not regret it one bit! I talked to several people on this forum who had it done and recommended it. I also had some kind of nerve test done before making my decision. I still have a crooked smile, but the nerve graft brought symmetry back to my face.