ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: stewie on April 18, 2007, 08:08:56 am
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Hi all,
I'm new to the forum. Had surgery in December 2005 on a 3cm tumor, so I'm about 16 months out. My facial nerve was left in tact, but seriously stretched. This past October I started to see a little movement. As of today, I can now make a closed mouth smile. Yesterday I saw my Dr. He told me that I was probably not going to see anymore improvement given that I'm approaching the 18 month mark. I am very upset by this. I was feeling optimistic until my Dr. visit. My question is. . . has anyone out there continued to gain facial recovery after 18 months? Should I just give up or should I continue to feel positive about moving forward? Any advice or experiences to share would be welcomed. Thank you.
Stewie
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Stewie,
It's only been 3 months since my surgery so I can't help you, but I was glad to read that you can now make a closed smile. Can you blink your eye yet? I have no movements yet and naturally when I hear that someone else has started to get movements I want to hear more.
Ellis
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All I will say is that I have heard doctors say no improvement is possible after 6 9, 12 and 18 months and I have heard plenty of people mention they have continuing improvement after 2 years.
I think that if you had NO movement at 18 months the prognosis would be bleaker...but it sounds like your nerve IS healing and it can't read a calendar!
I think you have plenty of reason for optomism!
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Hi Stewie: the neurologist I go to for facial EMGs said it can take 2 years for nerve regrowth. I'm 10 months out with no movement at all yet, but am still hopeful, & if in the end I don't get movement, I'll probably opt for the 12/7 jump. Like Amy said " nerves can't read calendars" KEEP THE FAITH GUYS!!!!
GOTTA LOVE YA AMY!!!! Nancy
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Hi Stewie,
I'm almost 20 months out. I'm still seeing improvement. I can make a closed mouth smile, too. I see more and more of my face moving. It's moving closer to my eye, but my eye still isn't blinking. I hope that it will continue to improve.
Jean
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Hi Stewie,
I'm also fairly new to the forum but not new to facial issues. I had a Facial Neuroma removed in 1992! The most important thing I can tell you is despite the fact that we wish the doctors new everything & the doctors wish they new everything, they just don't. The day before my surgery the doctor told me I wouldn't blink, my eye wouldn't close & I wouldn't drink from a straw. The day after my surgery my eye blinked when my other eye blinked, it closed (90%) when the other eye closed. When I was finally ready to eat and drink I tried to drink from a glass and the milk ran down my chin. I got frustrated and my husband suggested I try the straw, I told him the doctor said I couldn't use one, he told me to try it anyway, I did and it worked just fine. In fact, to this day I use a straw a lot as I have a bit of trouble with some of the water bottles we use while hiking. I think for the most part I use a straw whenever I can just because "I CAN"!
The doctors tell you what they think will or will not happen but they don't know for sure. I started to regain the use of the left side of my face 6 months after my surgery as the doctor thought I would. He told me my eye would water again within 2 years, it still doesn't. I can't tell you exactly when the improvement in my smile came about because I was to busy raising children and working to detect all the improvements. I do know that I noticed improvements over the YEARS as my face grew stronger from the use of the muscles and the other nerves taking over for the nerve that could no longer do the job. What I'm trying to tell you is DON'T give up hope because of what a doctor tells you. He may be wrong but if he's right you will be ok. I have a closed mouth smile too, I also have a husband of 30 years that loves me & a job that I got 3 years after my surgery. Good-luck, Jill
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Hello to everyone that responded to my question on facial nerve recovery time!
WOW! I can't thank you enough. Everyone's comments are so positive. Thank you thank you! I've decided to NOT give up! Today I'm feeling much, much better about my situation and all of you people have added to my optimistic outlook.
I like the calendar comment. It's so true. Everyone's body heals at a different pace. I'm always told that my tumor was "so unusual" and that my recovery has also been very unusual. Why should I give up just because I'm approaching 18 months?
Thanks again for all the encouragement! I hope that I can offer the same for someone else!
Stewie
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All I will say is that I have heard doctors say no improvement is possible after 6 9, 12 and 18 months and I have heard plenty of people mention they have continuing improvement after 2 years.
I think that if you had NO movement at 18 months the prognosis would be bleaker...but it sounds like your nerve IS healing and it can't read a calendar!
I think you have plenty of reason for optomism!
Thank you so much for your input! I totally agree with you. I wasn't sure, but I thought that once before I've seen people post information that they have seen recovery long after 18 months.
Thank you again. I love your calendar comment. . . .you're so right!
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Yeah Stewie: I find it's so much easier to deal with the paralysis knowing others are in the same boat, granted, at different stages, but we all know how it feels, etc.
Believe me, just your writing in about it helps, we're not alone.....
Best wishes my friend, Nancy
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Nancy,
I was reading before about how you feel about the facial issues. It's really upsetting, I know. You have a wonderful outlook. I'm sure everything will work it's way out. Someday all of this stuff will be long behind us and we will be laughing and smiling along with everyone else! I know it will be!!
Your friend as well, from across the miles,
Stewie (real name is Kathy)
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Today I saw my doctor for my 18 month check-up. (Really 18 months.) He told me the MRI I had taken last month looked fine. He was surprised by the amount of new movement he saw in my face since he saw me at 12 months. He thought that what I had at 12 months would be what I would have. He was thinking recovery was complete. After seeing me he says he doesn't know when recovery will be complete. I asked him about facial retraining. He thought that would be a good idea now. At 12 months he didn't think it would help. I go for that appointment on June 5. I'm also seeing another doctor about my eye. I may need to get the lower lid lifted again. That sounds much better than haveing the corner of my eye sewn shut more. The last lower eye lid lift seems to have "fallen." The doctor seems to think it may last better this time because of the increased movement in my face. I go back in a year for another visit and get another MRI. He's also going to check my hearing then. If that is good, then I get to skip a year.
Jean
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My surgery was Aug 05 ... I and still seeing improvement ... and my face was DEAD after the surgery .... I could not drink from a glass at all - used a straw .. I bet I received funny looks the first time at a bar , I ordered a beer and a straw !!...
had a checkup recently .. the Doc. told me he as seen patients see improvment up to 3 years! .. but at this point he did say it will never be 100% ... but I will be better yet (I can have a small smile, drink from a bottle.. now)
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My surgery was July 05. Though I recovered tone, I never recovered much movement. I can drink from a cup and blow out candles but I
never recovered even a closed mouth smile. It seems that my lower lip recovered but not my upper lip. The doctor referred me
to a plastic surgeon to ask about tucking up the lip so that I do not have a perpetual frown. I have not made that appointment yet.
I have been doing Mom things instead-much more fun. Our oldest just got accepted to college, our middle is starting high school, and
youngest is still finishing elementary school. I just started volunteering in the elementary school library which I used to do before the surgery.
The AN side of my face still feels uncomfortable and I wonder if it will always be that way. It has never seemed logical to me that if
the nerve shows some sign of recovery that it would not continue. Hoping for continued improvement for all.
Sue
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Hi Sue (daylilly): Thankyou for the well wishes to all of us waiting for facial nerve regeneration/rejuvenation/any-nation !!!!
I'm only 10 months out, still no movement, but I've been going for acupuncture (anyone who fell off their chair laughing about this get right back up !!! I'll try anything !!!!), & am hoping, hoping, hoping. Have you had any facial EMGs done? I'm having them routinely, every 3-4 mos, next one 5/29; once I don't show any more signs of nerve regeneration then it's onto the surgery slab again for a 12/7 jump. I think that maybe the nerve is trying to do the best it can, & I geuss sometimes it can only get so far along & then that's it.
Wishing you good thoughts & happy days, Nancy
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Joef,
I thought I had read somewhere that patients can recover and see improvement for years, just as you said. I think its great the a Dr. was honest enough to say this--and not just cut someone off at the "expected recovery time"!
Thank you for your reply--I hope that you continue to see improvements! That drinking beer from a straw has to be a real experience! Good luck to you. . .
Kathy
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::) I am very thankful to have found this site. I had surgery in Jan of this year due to a mucoepidermoid carcinoma in my left parotid gland. At first the doctors said my facial nerve would not have to be sacrificed but after hours and hours of surgery the tumor was a lot larger than what they thought and the upper branch was taken, the lower branch stretched. I have a closed mouth smile 4 months postop, I can close my eye only 85%, but there is some drooping and still no improvement of the upper lip. I have been very depressed. People look at me differently, I am getting ready to graduate nursing school and I am so afraid to go on interviews because of what people will think. Has anyone tried a facial nerve graft and if so has it worked any. I am blessed to have read all your comments. It makes me feel better knowing their or others out their with the same worries.
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Hi Asiaasia: Yes, there are 3 people on this post tht I know of that had the nerve graft. It takes awhile before you see results, about a year, & 2 ARE seeing results (Chris & Denise). Taylor had hers done more recently so she has to wait, but of course movement is expected after a time. I am also an RN, however, I've been off the floos for 10 years (worked the floors for 17 as a nurse, 7 prior to that as a nurse's aid while in H.S. & college). I'm amazed that you got thru nursing school after surgery!! You should not be denied a job because of how you look, that is discrimination & there are laws in place to prevent this. As long as you are qualified & can do the job, that's what counts. As a matter of fact, you would be an asset because of the compassion I'm sure you have after what you've been thru. (I had an awful experience post op with the RNs - it was a shock to me the way most went about their job, anyway, I'm getting off track). I also have facial paralysis (no movement at all). You WILL get over the sadness, not care so much about people looking at you, I'm 10 months post op, I know how you feel at 4 months. I've come to realize our bodies are just an outer covering to what's important, our spirits - granted our bodies can be a nuisance when they break down, we need to take care of our bodies as best we can, but it's what's inside that counts. I feel like, I have a beautiful smile on the inside, you just can't see it on the outside.
There are many areas of nursing to work in - look at all your options as you are about to graduate. I wish you a fulfilling career & much happiness my friend, Nancy
ps. I have routine facial EMGs which is showing some nerve regeneration. I will do the nerve graft when my surgeon feels the nerve isn't regenerating as hoped.
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Hi All,
I am over 3 years post surgery. I can assure you that your face will continue to improve.
If you are in Wisconsin, I would strongly suggest that you see Jackie Diels. She is a facial retrainer at University of Wisc Madison. I saw her at 18 months post surgery too. If you are interested in hearing more about her as well as hearing about my recovery, in the ANA notes March 2005 publication, she wrote the cover article on facial recovery and I just so happened to be the inside voyage contributor. Call the ANA and they will send you it. (It may have been 2006)
I still don't have full wrinkles across my forehead but I do see that my eyebrow is attempting to lift on the affected side. I do get botox to lessen the difference between the 2 sides.
If your face is tight on the affected side, massage is wonderful too.
Jackie will show you a bunch of stretches to do for your face to help.
Take care and hang in there.
Mary Paschen Limanowski
AKA life is good
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Mary: Thankyou so much for the words of encouragement !!!!! You made my morning !!!!! yes, LIFE IS GOOD !!!!!
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lifeisgood,
How encouraging! After 3 years you're still seeing improvement. Thats wonderful!
I am from Wisconsin and have recently come across the name of Jackie Diels. Can you tell me what seperates her from other facial retraining/facial nerve specialists? Her name pops up here and there. I'm curious because I do see a Dr. in regards to this. . . . but if Jackie Diels is better qualified, I'm all about going to Madison. Again, what is it about her that makes her so highly recommended?
Thank you again for your words of comfort!
Kathy
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Hi, I am only 7 months out and I have some facial moment. My left side of my face had the droop at the corner of my mouth. I now have a 3/4 smile and that seems to be getting better very day. I have been going to a gym and working out on the cardiac machines( treadmill, etc..). I think it's important to get the blood flowing and I might be helping the healing in the nerves. Since I have all the time in the world, I do this everyday Mon - Fri, I really look forward to doing the exercises. Everyday I walk 3 miles and then I work on the equipment.( Abs, arms, legs etc...) I get a little wobblely :o and I have to sit for a while but after I feel great. Bob
TastyKakeman
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Hi Kathy. I was under the impression that that aren't too many true facial therapists in the country. Some physical or occupational therapists may do some of it. I am in Iowa and made one trip to see Jacki in 2002 after my first AN surgery for some tightness and synkinesis. She has been at the last 2 AN symposiums and will be at this one coming up. I have frequently mentioned the www.bellspalsy.ws website and Jacki has written on facial retraining on that website also. I had facial neuroma surgery a little over a year ago with a nerve graft done at the same time with some return of my face. Have got used to to all enough that doubt I will do any more facial therapy visits.
One of my daughters went to grad school in Madison and hated it when she left as really liked the town. Cheryl R.
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Wonderful news Bob, so happy for you - it must feel great to get that smile back (slowly but surely). I don't remember, was your facial nerve cut then reattached, or was it just stretched ? Good for you also for getting back into exercise mode. I've been having a little trouble in that area. I try to walk 2 miles, last time I did was Sunday, & felt like I was going to pass out toward the end(it was a hot morning in South Florida! got a headache too, think I was dehydrated, so will carry the water with me from now on.) I just signed up for pilates reformer classes, I start Thursday - always liked it, haven't done it for about 3 years, so I'm treating myself !!!!!! Always good thoughts, Nancy
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I noticed today --- when I was drinking from my bottle of water today, it was a little better .. (less dripping) ... I looked in the mirror ... and sure enough the top lip was moving a little better !! ... and I'm about 20 months out !! yea!!!
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Joe it's so good to hear you are seeing movements in your lip. I can't wait to post my first movements!
Ellis
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That's great Joe! I have noticed the same thing with myself. I am 8 months out but i was hoping by my 1 year that something spectacular was gonna happen. I am doubting it very much now. I have been hearing that people are seeing there best recovery at about 18 months. 18 months seems like forever but I can wait it out. 8)
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Joe: I'm SOOOOO HAPPY FOR YOU !!!! This HAS been a long time coming. Wishing you continued movement !!!!!!
Always good thoughts my friend, Nancy
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I am almost 2 and a half years post op. I had a 4 cm acoustic neuroma. My nerve was not cut but stretched. I definitely had improvement after 18 months. In March I went to see Jackie Diels at University Wisconsin at Madison. My insurance gave me an approval to go out of network because they really didn't have anyone in network who new how to treat me. It was a great learning experience. She showed me that I had synkinesis(abnormal movement). Most of it is caused by my muscles being too tight in my neck. She taught me how about the muscles in my face and how to stretch it so it have more natural movement. I got some very small movement exercises to do and I already can see improvement. It is a long process, but definitely not without hope. Anybody with vestibular damage is use to baby steps! Her email is hj.diels@hosp.wisc.edu. Hang in there and don't let anyone tell you there's no hope. Cath
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Zanybrainy- that is great news! Thanks for sharing. My nerves were stretched as well and I saw a little improvement 6 months after my surgery but not much since then. I have good and bad days with pain in my face. Its hard for my personality type (A) to have any patience, the last year I've learned a lot but I guess I still want immediate results! Hope is good, thanks for the info.
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I am 3 yrs post op and saw Todd Henkelmann in Pittsburgh. I enjoyed the facial therapy and highly recommend it. I saw quite an improvement in only 5 months. He has done a lot of research on facial paralysis and recovery and they have seen improvement after many years. He saw a patient who had fp for over 5 years, he was able to help her regain some movement.
He told me the best I could hope for was being at 80-90%. That was good news to me.
Don't give up hope.
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Pembo,
Thats great news about your recovery! Wow, after 3 years. Thats fantastic! I'm so happy for you.
Kathy
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Well, I had my repeat facial EMG yesterday, looks like my nerve's been taking a break - the EMG showed very little improvement from the last one in the chin area, still no improvement in the cheek/eye area. I have my f/u with the surgeon June 6th, we'll see if it's time for the 12/7 jump then. I gave it the 'ole college try' with the acupuncture. It's funny because I feel like the droop isn't as bad as it was, & my right side has a tight feeling, but the EMG didn't show as much improvement as I thought it would. So there you go, 11 months post op today. I'm keeping good thoughts re: the future, & I'll do whatever I've got to do !! Nancy
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Nancyann, I too had a gold weight, a lower eyelid lift and an emg with very little results. Now 28 months later my face is about 90% better. I had the weight removed about a year an a half after it was put in. I have even had people ask me which side is the bad one. I would definitely recommend on the the facial retrainers from the Bells Palsy website. Education about what is going on is so helpful. I wish there were more therapist who specialized in this. It is a huge quality of life issue. Blessings, Cath
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Thanks Cath: I appreciate your words of encouragement. BTW, was your facial nerve stretched or cut? Also, did you start facial retraining after movement started? Thanks again, Nancy
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Nancyann, My facial nerve was stretched. I started to see more improvement (surprisingly) after 18 months. I did not go to Jackie Diels until over two years after surgery. My insurance let me go to Jackie in network because they had no one that was familar with facial retraining. My husband and I made it into a vacation. My husband even went to coffee with her husband while Jackie and I worked. I went because I wanted to feel like I had gotten educated answers about my face. Blessings, Cath
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Cath,
I'm having an experience similar to yours. I had 0 facial movement right after surgery. I noticed some good improvement around 18 months. I'm now 21 months and have just started facial retraining. I'd read Jackie Diehls website and had been trying some of her exercises. My PT also had given me some exercises to do in the very beginning. He told me to get a mirror. I've been working on symmetry. My facial retrainer said that she didn't see any signs of synkineses.
You said you had an eye weight and then had it taken out. When did you get your eye weight? Does your eye blink normally now?
Your post really gave me hope for the future. Thanks for sharing.
Jean
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Hi
Can ayone tell me what is the web site for Jackie Diehl I never heard of it. Thanks
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Do you mean the www.bellspalsy.ws site which has a facial retraining section written by her or some other website?
Cheryl R
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Yes thanks I found it.
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This one page has a bit of info about the facial nerve paralysis plus it mentions some time frames re recovery etc... thought i'd send it in as even a little bit of info can be helpful I guess and i was surprised that they say up front that nine months can pass before any movement at all is seen from a nerve graft.....
W.
oops sorry the link didn't come thru.... i think this is it: http://www.earlowen.com.au/Facial%20Nerve%20Grafting.htm
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Jean, Sorry I am writing back so late, my computer is having a mind of it's own lately. I got my eye weight about 2 months after surgery and had it removed 16 months after surgery. It really helped and I was really glad to get it out!!! During the year and a half after surgery, both of my daughters got married. They are four years apart and got married ten months apart. I just kind of gave it over to God and moved forward and it all worked out great. Actually, I have been having some tickle sensations in the corner of my mouth. On Fourth of july I had a sudden shock feeling in my tongue and then very strong tickle sensations. I still have some numbness on the AN side but I am so much better. Someone even asked which side it was! As you get more movement you will most likely will get sykinesis. Don't do the extreme movements when you are doing exercises. Until everything is activated, you don't want to emphasize the abnormal. Check the bells palsy site for stretches for your face. Jackie explained that once your nerves regenerate, it is not weakness that causes you not to smile, but your muscles working against each other. My neck muscles definitely took over my face muscles. By stretching them and my check muscles it has gradually released my smile muscles. I am definitely much better, although not 100%. I like to think of it as giving more character to my face. Have you noticed how many people that haven't earned it like us have a crooked face. I am always telling my husband to look at someone's crooked face (I guess that makes mine ok). I am two and a half years post surgery and thankfully my doctor is encouraging me to keep expecting improvements. Blessings, Cath