Facial palsy after nine months..Please help me!

[LADavid]

Michela
No need to apologize for your English -- it's great!  I'm sure most of the our Italian goes as far as "Ciao and Buongiorno."  By the way, I did spend several weeks driving around your great country in 1988.  It's beautiful and charming.  But if I thought LA drivers were crazy...one need only to drive around Rome.  Yikes!
David

[OMG16]

Michela I am sorry to hear of your diagnosis and surgery.  I am proud to welcome you to our forum though.  Please don't lose hope and let us help you through this.  I know as a Mother of a 19 year old that my heart goes out to you and I feel your pain as only Mothers can do.  I am wrapping my arms around you and kissing your forehead as I post this!    You have so much to be proud of and your english is perfect in my opinion.  If you need a adoptive Mother for this I would love to fill those shoes for you.  I have enough room in my heart for all of the adult children on this site so feel free to PM me if you would like to chat.  I am here for you for the good times and the bad.  Sending you a Mothers Love...........16

[Kaybo]

Michela~
I, too, had a large tumor that had reeked havoc on my facial nerve b/c of its size.  After a year, they wanted to do a 12/7 graft.  This was 12 years ago and I was the 12th person to have this done (so they tell me).  Unfortunately, I still do not have much movement -- a little, controlled by the placement of my tongue on the roof of my mouth.  BUT since it was reattached to a HOT (live) nerve it rejuvenated the right side of my face again (which had TOTALLY atrophied).  I know I get stares all the time (but not like I did when I had my eye sewn shut too! ) ), but I just don't really let it stop me -- there is just too much life to live and I am immensely thankful I have that life!!  Please PM me if you would like to chat more or if you want the address to my blog which has pictures of me (& my beautiful girlies) on it!
K

[Jan D]

Hi!

I'm a brand new member to this site, but have lived with facial palsy for over 40 years.  Is there anyone out there that has had it this long?

I had my AN removed when I was 15 years old - lost hearing totally in my right ear, right eye does not close, nor tear and my right side of the face was totally paralyzed.  Back in 1966, microsurgery was in the pioneering stages, but my family found a doctor that was one of the pioneers.  After a 12-hour surgery, all of the tumor was removed (size of a golf ball - not sure what this is in CM?).

My seventh nerve was totally wrapped around the tumor, so it was destroyed, with no hope of growing back.  Nevertheless, the doctors waited for one year to see if I had any improvement, which did not occur.  At that time, I had a graft to the nerve in my shoulder, which, after time, produced a small amount of movement with much concentration.   I have been living this way ever since.

Just last summer, I discovered a physiotherapist in England (Diana Farragher), who has had great success with AN patients, using a neurotransmitter to reactivate nerve activity.  I am working with her and am hopeful for improvement - in fact, I have already seen some improvement.  It's a slow process, but iI've been this way for 40+ years - I think I can wait a little longer.

It's so reasurring to know that there are others out there with simillar issues and who definitely know how it feel.  I am looking forward to conversing with you in the days to come.

[nancyann]

Hi Jan: nice to meet you.   I think this is fantastic news!   I had facial paralysis almost 1 1/2 years before I decided to go the
route of Temporalis Tendon Transfer instead of a nerve graft.   I still have no movement, but my droop is gone.   I feel like my old self again.

I haven't found anything yet to help with the eye issues - that's the next thing I want to tackle.   I put lubricant in about every 2-3 hours,
I have a platinum weight in but my eye still doesn't blink.  I wear an 'eye bubble' at night.

Please let us know how the facial therapy is going.  I am very curious about it.

Always good thoughts,  Nancy

[lori67]

Your English is great.  My spelling is not!   

Lori

[michela]

America is such a great country and is full of such wonderful and lovely people as you are! I am glad, happy, felice of hear your stories; it really makes me feel better and gives me a lot of hope for the future. I will surely post my next "adventures" and when everything will be over and I will be smiling again(and I hope I will), I will post my photos because I know it can help so much; the amazing photos of Nancy Ann helped me and gave me a lot of faith! Thank you thank you thank you!!!!!!!!
P.S. at the end of all this, I can always say that, even if I haven't gained a real smile, I have gained a lot of friends and I have improved my english

[4cm in Pacific Northwest]

Welcome Jan D!

Cheers,

4 

[chrissmom]

Michela,
I replied to your personal e-mail but I will also say this to benefit others.  The 7-12 jump graft only uses a piece of the facial nerve and joins it to a very small piece of the tongue nerve (hypoglossal nerve).  You do not lose taste or swallowing.  The facial nerve grows and finds new pathways.  You will wait at least a year before you see results.  The operation itself only took about 2 hours.  He was able to do his regular activities after about a week.

After the tumor surgery Chris had to learn to walk, just like you.  He can run now !  He worked so hard.  He had spirit and determination.  We said many prayers.  Today he is back in college, he is deaf in his right ear and he has difficulty with his right hand.  The facial palsy caused him to have eye problems.  He had a gold weight in his upper eyelid and last week he had surgery to raise his  lower eyelid to protect his eyes.  He was doing fine with just the gold weight until he went back to college and found that reading and computer work caused a problem.  You will continue your education too.

I want to go to Italy.  CIAO...

[marg]

nancyann,  Your picture looks great !  I am so happy for you that there was so much success with the Temporalis Tendon Transfer.  It truly was the high point of my day today to see your success.   It is great that you had his option.
Margaret

[nancyann]

Thanks Margaret - I'm very happy with the results!

[Kaybo]

Nancy~
I am still waiting to hear back from JH -- I e-mailed them the other day b/c it was after hours, but think I will give them a call tomorrow since I still haven't heard.  What do you think??
K

[nancyann]

Hi K:  I think I emailed them 1st also, it took a few days (as I recall), & someone who arranges appts.  called my home tel# & that's when I set up the initial appt. (it's all coming back to me now).   After the initial appt. is when either Sophie or Erin set up the following appts. 

[Kaybo]

Nancy~
OK...thanks...I will wait until Monday then!
Have a great weekend!!
K

[michela]

Here I am again!
yesterday I went to the date with the neurosurgeon and he told what I was already thinking: I will need a nerve graft! He doesn't know if I need an hypoglossal to facial anastomosis or a cross-face graft; nest week he will call a surgeon (one of the most famous in Italy for these things) and will take a date for me. I am scared and he told me that I won't be the same again; I will gain some movement and I will improve a lot but he told me that I won't be like the old me. What does it mean? I know that there is the House Brackmann scale for the palsy; I imagine that I will never gain a I grade in that scale, but I would be happy even if I could only close my eye  and laugh a little. He also told me that these kind of surgery are quite complex and that they don't take 5 minutes to do. 
I will keep you update and I really really thank you all for the support. I will do this surgery and I surely will try to get better because I know I can't live like this.
A great great kiss   
Michela