Facial Paralysis - Hypoglossal facial anastomosis (12/7 transfer) did it help???

[stephanie23]

Hello Everyone,

My name is Stephanie and im 23 years old. Ive had my AN surgery 3 months ago for a 5cm AN. My right side is totally paralized. I saw my neurosurgeon last week and she said that if things dont go better for me or if i dont feel any difference for the next two months then we will do hypoglosal facial anastomosis. My question is has anyone done this kind of operation with a similar size AN and did it help?

Im very scared. I was working as a stewardess on a boat cruising to the Carribean and I lost my job due to my condition. And having left with a deaf ear i will never have my medical certificate to work on boats again-. Now im scared that if my face doesnt come back no one would want me to work for them again.

Im thinking about going back to studying( Ive already done 2 years in Tourism and i have 2 years left) but im really scared i wont be able to find work after that.

Thank You very much.

[mandy721]

Hi Stephanie,
Facial nerve damage is one of the hardest complications to deal with.  Is the nerve severed or damaged? If the nerve was severed, facial re-animation surgery is probably the only way to get movement back.  If the nerve  is damaged, it might regenerate.  It is a very slow process, but over time there can be noticeable improvement.  There is a lot that can be done, both surgically and through neuromuscular facial retraining, to improve facial appearance.  It is hard to see beyond the here and now, but please know that healing is a long process.  Find out as much as you can about the procedure.  I hope others who have had the 12/7 transfer will comment.
Miranda

[Jill Marie]

Hi Stephanie,

As Miranda mentioned we need to know more so we can help you.  My facial nerve was severed, at about 5 1/2 months I noticed a bit of movement and things continued to change after that.  Twenty-three years later I can't smile but can grin.  My eyes and demeanor let people know that I'm happy to see them.  At rest my face looks normal, eye blinks but doesn't tear.  I didn't have any other surgeries, they either weren't available then or I didn't know about them.  If you need any surgeries there are others on this message board that can help you.  Either you can do some searching or you can wait tell those that have had facial surgeries respond.   If you send them a message they will probably reply as a lot of people that have been on this board like to help others when they can. 

A lot of things have changed/improved since my surgery so you have a lot more options to explore, also things will continue to change so don't let the future scare you.  I got a job 3 years after my surgery, (didn't get one sooner because I didn't try) working with the public, 19 years later I still have the same job. 

Yes the road a head is rough but you will make it and we are here to help you when you need us!  Jill

[stephanie23]

Thanks guys for your response. I know the next op will be done through the Spanish Health System so that will be free. After that, thats what im scared of. And how if this operation doesnt help. And i dont have a private insurance and my family is not rich to be able to pay for this kinds of stuff. I guess i just have to wait. And also, i know that the size of the tumor has everything to do with the results and mine was huge.

[Smedina]

Hi Stephanie—

My AN was upwards of 4.5cm.  I was diagnosed just after my 36th birthday.  Like Jill, my facial nerve was severed.   I had the 12/7 graft done about 4 months after my craniotomies.  Since you are having the 12/7 surgery so soon, I am going to assume that you are in the same boat.  Whatever the case, I need to echo cannot stress enough how important it is to be patient with the healing process. 

It took about 3 months for me to start seeing and feeling the benefits of the surgery.  I am still seeing the benefits and improvements.  The tone in my face has improved immensely, looks pretty normal at rest,  and I can generate a decent smirk.  I’ve also done neuromuscular retraining which has been really helpful in exploring how my face works now.   

Best of luck to you! 
-Sam

[ANGuy]

Smedina:

Pardon me if this is a stupid question.  You say the nerve was "severed".  Are you saying the nerve was completely cut in two?  I guess that would be a worst case scenario.  So, with that kind of situation they are able to repair it.  It is encouraging to hear that.

[Smedina]

Hi ANGuy,

Yes, it was severed/cut at the brainstem, but the rest of the nerve was healthy and viable for the hypoglossal transfer. Mine was pretty much a worst case scenario all the way around. I had a lot of bleeding and cerebellar swelling, all of which put the facial nerve at greater risk.

-Sam

[stephanie23]

Thank you so much Sam! you don't know how happy you made me feel today because now i know that the hypoglossal transfer can work and it just gave me hope Now i just have to wait. My neurosurgeon said that my nerve wasn't cut, just stretched out! The operation will be early next year (6 months) Im quite scared though because i know there are risks with using your tongue nerve but i just pray that everything goes well. Again, thank you so much! And to all who replied and helped me. 

[stephanie23]

smedina, just wondering, are you able to blink now? and are you happy with the 12/7 you did? thanks!

[Smedina]

I am extremely happy I had the surgery.

Yes, I can blink.  It's a little slower on the AN side, but it's improved enough that the eyelid weight was removed about six weeks ago. I suspect I'm stuck with the eye drops though.

I feel like everything moved so fast for me, I  really didn't allow myself time to worry about any risks. My speech is ok. It took a little bit of a hit, but is improving all of the time. I'm not sure how much of the issue is just related to the facial paralysis.  I can't say I've noticed any other tongue related issues.

Let me know if you have any other questions. Glad to help!.