ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: michela on February 08, 2008, 05:20:55 am
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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 :P 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 :-*
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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
(http://image2.frappr.com/pix2/i/20080111/4/1/4/41482a3915a6240b3112ca829376a2de0_large.jpg)
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
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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 :D 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!
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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
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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
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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.
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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!
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nancyann -
love the before and after pictures Joef provided us with. What a great way to show us your surgery results.
You look marvelous ;D
jan
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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!
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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 :)
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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!!!!!!!!!
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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.
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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
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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 :D 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 :D
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Again SORRY FOR MY HORRIBLE ENGLISH.. And Thank you..I am also improving my english here :D
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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
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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
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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! :o) ), 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
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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.
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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
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Your English is great. My spelling is not! ;D
Lori
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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 :D
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Welcome Jan D!
Cheers,
4 :)
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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... :)
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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
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Thanks Margaret - I'm very happy with the results!
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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
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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.
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Nancy~
OK...thanks...I will wait until Monday then!
Have a great weekend!!
K
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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. :o
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
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Michela: I am so happy for you that there is a plan to do a nerve graft, whichever one the surgeon decides on - they both help with facial symmetry & movement!
Hang in there my friend!!!!
Always good thoughts, Nancy
ps: My paternal side is from Bari, & my maternal side is from 'Casa Vedere', a small town just south of Naples...
my father (God rest his soul) made the best mozzarella I ever tasted, they had a 'lattaccini' store in Brooklyn, NY;
my mother's family had a pork store in Brooklyn. Boy, could they both cook!!
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Michela~
Hello!!
Just remember that the girl that everyone knows & loves will ALWAYS be the precious person on the inside, no matter what the outsiide looks like!! I have had a 12/7 graft and that really does help. I have really been looking in the mirror - something I just don't stop & do much!! -- and I really have a pretty good closed-mouth smile. The reason it really doesn't look that great in pictures is that I am just a "live life to the fullest" and so I always have a big, teethy smile!!
Know that I am always here for you!!
K
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Michela: Any news yet re: when your appt. with the neurosurgeon will be? Hope you are well, Nancy
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Michela,
Thinking of you and wishing you the best.
Rita
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Michela I am glad to hear you have a plan. I agree with Kaybo you are a wonderful person and that is what matters most. Let us know when your surgery is and maybe you can post pics like Nancy did. Many kisses to your forehead. :-* :-* :-* 16
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I am well thank you all for thinking about me!! I am still waiting for the call of the neurosurgeon and I am quite nervous about it; when I talked to him, it seems that he would call me back to let me know about the matter in a while, instead it's two weeks that I am waiting for his call, trying to call him at the office, but he is always very busy and can't talk to me..
Tomorrow I will go back home ( I study in another city, where I don't have internet,it's quite expensive :( ) and go to his office to meet him when he stops working..Oh my God! Ihope that this story will be soon over!! I hate waiting for something..Thank you all, NancyAnn, Rita and 16, and Kaybo too, you are all great!
A big big kiss!
Michela
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Thanks for the update Michela - please continue to write when you can & let us know how you're doing.
Always good thoughts from your American paisano.
Nancy
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We will be waiting to hear from you when you get access to a computer. Good luck and know that we are all thinking of you and wishing you the best. :-* 16
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Nancy (& everyone)~
Just wanted to let you know that I am having a consult with Dr. Byrne at John Hopkins on March 19th (my wedding anniversay-we'll get to go to a real restuarant to celebrate!) for the Temporalis Tendon Transfer (T3). Of course, if he sees my pictures and says that there is NO hope, I will cancel the appointment. I am still talking to the insurance about whether or not they will cover it "in network," but we just decided to "eat" the consultation cost to check it out. Wish me luck!!! Thank you, thank you, thank you Nancy for sharing about this and leading me this way!! :-*
K
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Thank you K, but it's actually Pattibobatti, not me, who is the trailblazer. We have HER to thank for finding Dr. Byrne. I just grabbed onto
her coattail !!
Great way to celebrate your anniversary: the consultation, then the great seafood dinner - ENJOY both !!
Always good thoughts, Nancy
ps: Keep positive thoughts - this procedure was designed for ANs & other tumors that cause paralysis - time frame not an issue (so I have read).
It's for those with NO chance of facial nerve impulses returning.
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After removal of "Timmy the Tumor", I had total facial paralysis for 2.5 heart-wrneching years before getting the nerve graft 4 months ago. MY FACE JUST STARTED MOVING last week! PRAISE GOD! The muscle contractions are involuntary but a joy nonetheless!
Michela (and anyone else), have you gotten an EMG? I had 2 different kinds. The one before nerve graft was to test the potential fillibration. My results were dismal but better than nothing and being paralyzed forever.
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Angela,
My 4cm’s name was Ted. Lets hope Ted and Timmy are history…
RE
MY FACE JUST STARTED MOVING last week!
That is absolutely fantastic news. Congratulations!
Cheers,
4
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4 that is awesome! Now you can ride your bike with no hands and facial movement. It will be in no time we will not be able to keep up with you. Kisses to your forehead. :-* 16
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What a funny joke give a name to the Neuroma!
I think I will call mine Totò (as an old famous actor in Italy)... I think it's important to joke about it, it makes things more easier to think about..
It's wonderful Angela that you can move your face after the graft! What kind of graft did you have?? I will see the surgeon on 7th April and I am looking forward to talk to the doctor!!
Cheers and happy easter! I will eat a little of chocolate egg for you all! :)
Michela
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Hi Michela (LOVE the name!)
Ok, Toto for you (as in Wizard of Oz? Glenda, here, knows I am a Wiz freak) and btw, I call my AN the "brain booger".... best I could come up with.
continued wellness wishes to you....
Phyl
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16,
The purple writing is me quoting Angela … my own face still is weird with synkinesis. :-\ My balance is good -but face … not so much. :-[ I hope to be heading out for neuromuscular facial retraining therapy in the not so distant future. I never found a qualified therapist in the Pacific Northwest – so currently I am looking at Wisconsin…. Nothing like medical tourism as a way to see the USA.
4
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The Atlanta, GA clinic has facial retraining too....for anyone who is closer to there ( I'm not close to either one... as 4 knows from our talks). Here is to recovery for us all
marg
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Dear "4cm in Pacific Northwest": My sisterinlaw (an optometrist) had a patient with synkesis! I was referred to her just before she moved from San Francisco to Oregon (Washington?). I don't know if she has established her practice up there but please look up SARA SHAPIRO if you get an opportunity.
Through Sara's partnership with RehabiliCare, I was able to get an electric stimulator for my facial muscles. I don't know if it idid or did not work; However, my view is "it's worth a try!" At worst, it improved circulation in my face.
She was the first [and only] person I have seen with facial paralysis. I don't cry often but she knew exactly what I was going through without me having to verbalize every detail. That alone was priceless.
Dr Jackler says I have wasted alot of time and money. That may be true but I am confident that I did everything I could do in the past 3 years: pray, electrical stimulation, chinese herbs, facial massage, acupunture, and more prayer. I can look back without any regrets!
Good luck--
P.S. I like the names Toto and Booger >)