Facial palsy after nine months..Please help me!

[michela]

Hi to all! After a long time, I finally decided to join this site..My name is Michela, I am italian and I am 24 years old. Last year, in May, I had surgery to eliminate an acoustic neuroma, a very big one (>4cm), and as a gift I had a facial palsy. My surgeon told me he tried not to cut the facial nerve but this poor nerve was really stretched and stressed and he couldn't tell me if and when I would recovery..the neuroma was around all the nerves from the V to the VII. I had double vision for five months but now it's over, and I can study again. I did a few days ago an EMG and the results are quite bad: it talks about severe "denervazione" in my side of palsy (I don't know the english for denervazione, but it means there is no conduction of the nerve). Next Friday, I will go to the surgeon again to hear what he thinks and maybe I will have the graft.
I would like to have some advice and some experience about the graft, if someone after the graft can smile again..or if someone can smile again without the graft and without having no signs of recovery until 9 months..
Thank you and sorry for my english 

[Joef]

Nerves take a long time to heal ..    the doctor did say that my nerves were conducting .and would not do a graft and after 13 months -- I could move the corner of my month .. and today over 2 years later.. its still not right .. but stilll see improvements....

so .. give it a least a year .. if there are still no improvements .. there are several types of grafts that can be done .. here is our "nanacyann" (I hope you dont mind) ....

http://anausa.org/forum/index.php?topic=5544.msg52378#msg52378



and she looks great... 

ps ... I went to Italy 2006 .. I love it .. drove all over the place... from Rome - Florance - Pisa ... loved it ..  http://picasaweb.google.com/nwna.joe.fagan

[michela]

WOWWOWOWOWOWO! Thank you Joef! she really looks great..did she do the graft? you give me a lot of hope..I hope that I can talk to Nancyann to hear her experience..thank you very much!
P.S.looking at the hour of the forum, I have seen that in America it's 7 am and here it's 13 and I have just finished to eat spaghetti My city is Pescara and it's quite near Rome but there is the beach..I love my city but my greatest dream is to come in America!

[4cm in Pacific Northwest]

michela,

You definitely need to connect with Nancy Ann- she is our ANA pioneer in the facial palsy journey – not to mention a super trouper. (And a hero to many of us here on the forum  )

Here are some links to read. Know that it is not hopeless but YOU will have to be your best advocate… as far as advocating for treatment.

http://www.bellspalsy.ws/residual.htm

http://www.bellspalsy.ws/retrain.htm

http://www.bellspalsy.ws/treatment.htm

http://www.ophth.wisc.edu/about/fsSummer2004.html#botox

Here are some other photos of patients who had done what Nancy Ann had done.
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php


Know too that on this forum you will find lots of supportive people. This week I was so down-in-the-dumps thinking my situations was hopeless. I asked for help- and within the day I got it from people here on the forum.

The website is invaluable for us AN patients enduring recovery.

Hang in there and keep moving forward.

Cheers,

4

[michela]

I made retraining from July every day and then twice a week, I have seen some little improvement from the total palsy I had after surgery..Now I can almost close my eye, even if, at the end of the day, when I am tired, my eye looks greater and it closes less. The biggest problem is my mouth that it doesn't move at all: at rest I seem normal but when I talk or try to smile, my face droops and doesn't move, and so my cheek. The surgeon also told e that I could need a surgery..I want to regain my face the best I can..
I was really confident that I was able to recovery because since a month, I felt a tingling near my mouth and the corner of my mouth moves very little without my control, then when I read the EMG I thought that maybe they were only signs of my great hope to recover..but not of a real recovery. I don't know what to think, I am not scared of a surgery because I really want to smile again but I want to be sure my palsy will be over! Thank you all for the support and for the answers..In these months, I have been sad and upset, I felt angry and cried a lot, but I am alive and I can still do much for myself and for the others. Cheers..Michela

[nancyann]

Hello Michela:   It's nice to meet you (sorry it's under these circumstances).   When I was looking into what to do about my paralysis,
I was told to give it at least 1 year to see if there is any improvement.    Some people get improvement more than 2 years post op;
but the docs I spoke to said after 1 year they would do a nerve graft.     Because of my age (51), being a smoker,  & having had my facial nerve cut then
re-attached, I opted for Temporalis Tendon Transfer surgery (also known as TTT).   What the surgeon did was cut the temporalis tendon
& attach it to the tissues at the corners of my mouth, so when I bite down hard my right side goes up into a Mona Lisa smile (kind of like
a puppet).   I am still paralyzed on that side.    I had the surgery 11/20/07, & am still healing, still a little swollen. (I also had a facelift, browlift, & eyelid surgery).

At your age (24), you have the option for nerve grafting.   It takes longer to see results (6 months to 1 year), but you will have movement.
There are at least 4 people on this site who've had the nerve graft.  One in 2006 & now has a smile; 1 in 2007, still waiting on the
results, & 1 recently (not sure when the 4th had it done, but she doesn't have the droop anymore far as I can tell from her posts).
2 were closer to your age - they are being patient as they are still in the time frame for the healing process.

I don't know what % of facial nerve grafts are successful or not.   You'd have to ask the doctors.

I am so sorry you are going thru this,  I know how it feels - it is so difficult not only physically but mentally & emotionally as well.   There is help out there, whether you choose the nerve graft or the surgery I had.

Keep a peaceful heart my friend,   Nancy

ps:  I don't mind at all Joef, glad we can all help Michela.

[michela]

Thank you thank you!!!!!!!! I would be happy to talk to this people who had the graft..it would make feel myself better..I want the graft but I am scared to death to have another surgery but I will have it anyway! Thank you and a great kiss to all!

[leapyrtwins]

nancyann -

love the before and after pictures Joef provided us with.  What a great way to show us your surgery results.

You look marvelous 

jan

[nancyann]

Thanks Jan:  I'm feeling more & more like my old self - I'm going out more in public (not just to work), not as self conscious as I was....  As a matter of fact, I'm shopping a little TOO much - guess I'm making up for lost time!

[ppearl214]

Thanks Jan:  I'm feeling more & more like my old self - I'm going out more in public (not just to work), not as self conscious as I was....  As a matter of fact, I'm shopping a little TOO much - guess I'm making up for lost time!

Heck, she's just a purdy lady all the way around

[michela]

I hope to feel the same way that Nancy Ann feels now! I do not go out so much as before and I am scared to death to know a new person who doesn't know what happened to me..I hope to recovery somehow!!!!!!!!!

[chrissmom]

Michela:
My Chris is 23.  At 21, he was diagnosed with a 5.3 cm acoustic neuroma.  His facial nerve was stretched, like yours.  He had the VII, XII jump graft  3 months after the surgery.  The doctor said to wait 1 year. 

We started to see movement around his mouth at 7 months and he started facial training to prevent synkinesis.  Today we are seeing more and more movement and muscle tone.  The nerve grows so slowly.  His own facial nerve is slowly coming back too around his eyebrow.  He can lift the eyebrow good.  The mouth is taking longer but we have hope. 

By the way, my family is from Fontana Liri, near Rome.  I always promised my Grandmother that I would go to Italy.  I still hope to go to Italy someday.

[lori67]

Hi Michela!

My facial nerve was stretched out also and my doctor said to give it at least a full year before considering a graft.  I started to get some movement after about 8 months after my surgery and this month it will be a year.  I think I will continue to wait, as it seems to be getting better slowly.  It is hard to be patient though.

You said it was your dream to come to America - and it's mine to go to Italy!  My family is from Sicily and Milan.  My husband promises to take me there someday!  I'll come say hello when i get to Roma!  You can do the same if you come to Tennessee, but I think there are probably more exciting places to go in America!

Hope your recovery continues to go well!  Best of luck to you.
Caio!
Lori

[michela]

Thank you all!
For Chrissmom: I am sorry to hear that another boy has this problem as me..I can understand how difficult is to deal with such problems. I was 23 at the surgery and I was studying engineering, if I hadn't surgery , I would graduate (Laurea Specialistica we say in Italy and the english for?) this year, in 2006 I had my first degree (laurea of 3 years) in Engineering (Telecommunication). I left everything and had the surgery, it has been hard for me, learn again to walk, try to speak clearly, wait for the double vision to go away. I can say I have became a woman the day I left the hospital, I learnt a lot but also cried a lot, so I can understand what Chris passed. Can you tell me how long did it take the nerve graft surgery? How many hours? And after how many weeks was he able to go back to his life? Is a surgery that brings a lot of problems?
It would be nice if you and your family (and Chris of course) come in Italy; we have spaghetti, pizza, porchetta (pig ), salsicce..ahahahahaha I love eating I am in Abruzzo, Near Lazio Where is Rome.
For lori67:
I am happy to hear that you are recovering, unluckily I don't think I will. The EMG said there wasn't any conduction of the nerve..I am waiting for Friday..I will hear my neurosurgeon..Yes, I love America and I hope that I will come one day! I hope you can come too..we all eat very well, there a lot of things to see, and Sicily has a wonderful sea! Good luck and thank you!

Thank you, this forum is a beautiful idea and all of you are so kind and lovely! THANK YOU!!!!!!!!!!!!!!!!!!! CIAO!!!!! Now I go to sleep..in Italy it's 9:30 pm

[michela]

Again SORRY FOR MY HORRIBLE ENGLISH.. And Thank you..I am also improving my english here