ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on June 20, 2009, 10:47:53 am
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At what point in your recovery did you notice your biggest improvement in function and overall appearance? This is for folks that "woke up" with facial paralysis and House Brackmann 6. In other words complete paralysis immediately after surgery. Delayed Facial Palsy usually heals pretty quick so this survery is for those people like me that woke up with total paralysis.
A. 0-6 months after surgery
B. 6-12 months after surgery
C. 12-24 months after surgery
D. 24-36 months after surgery
I am 2 years post op on July 5th, 2009 and so far I have seen my biggest improvement at C. 12-24 months.
Angie
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Hi Angie: I had my AN surgery 3 years ago yesterday, & I still have a Brackmann Scale of 6.
I woke up with facial paralysis & it never improved, but thank science for surgeries that give
a normal face at rest ! !
Always good thoughts, Nancy
ps: it will be interesting to see how the survey goes - time spans when movement came back (or didn't).
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So far it's B) 6-12 months, but I am only 12 months out. I'm all for even more improvement next year and beyond.
Sara
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Hi Ang,
It is exciting to read that I could maybe expect even more recovery.
I am like Sarah 6-12 months, I saw the biggest improvement. Surgery was 12 months ago.
Michelle ;D
wow three years nancyann. happy anniversary!
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i seen the biggest improvement 24 - 30 months , and hoping for more
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6- 12 months
...Then more started up again here at 18 months :)
The synkensis we are still working on with therapy and botox ... but in this last month more of my upper teeth became visible in my smile.
DHM
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Most improvement first 4 months, since then very very slow gradual improvement now 21 months post OP.
Dan in Germany
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B. 6 to 12 months. I'm only at 14 months though.
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Z. mine was at 147 months (thanks to the T3) ;D ;D ;D
K ::)
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I am reading your post Kaybo thinking "WHAT!?! Then giggled.
You're so funny! I am so glad things are getting better for you!
Hugs Michelle ;D
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Kay, I think in your case you should count the years - or maybe even the decades. Keeps the math a little easier! ;)
Lori
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I am finding this survery is really boosting my moral. Since I'm only at 6 months and have only had slight improvement and that has been in the last two weeks I really can't add anything but it's so good to hear that for many of you the biggest jumps have been after a year. THat's really giving me hope. I also want to publicly thank DHM (4cm in Pacific Northwest) who helped me find a neuromuscular therapist. I'm so excited to get started! Let the movement begin!! (and I don't mean bowel, haha)
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I'm so excited to get started! Let the movement begin!! (and I don't mean bowel, haha)
Now THAT was funny!
:D
DHM
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mine was 6-12 months, next month will be my 3 yr anniversary. I have been doing botox treatments for a little over a year now.
Lisa
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My daughter has undergone 3 surgeries. One on 12/29/08, the next one on 1/19/09. Her face was looking 99% normal, when she had to go for her 3rd on 6/22/09. Now, her mouth is drooping again and she is right back where she started. So, after her 1/19/09 surgery, I would say it took about 5 months for the left side (tumor side) of her face to match her right side. Who knows how long it will take now because to me, it looks more droopy than it has before. But, she is ok with it, just happy to have made it through the surgeries and that she is alive.
Cindy
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For me, it was C, as I am currently at 8 months. My smile started returning at 7 months and is continuing to very slowly improve.
I was grade IV after surgery. My facial nerve was intact but quit at the end of surgery.
Samantha
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I had 3.7 AN surgery Aug 08'. Complete removal. Rt side facial paralysis after surgery no stimulation. I noticed first movement at the beginning of June 09' which is little over 10 months post op. My cheek is pulling up almost down to my lip and my face is looking more symmetrical now. Of course, I cannot smile yet. It is almost moving my lip. I don't know what else I will get back but it seems to be improving. When I showed my plastic surgeon last week, he about jumped out of his chair and couldn't believe it. He told me I will not need a 12/7 or T-3 or a Massetter to facial nerve transfer which is the surgery I was considering.
My eye still gets watery when I eat or wind blows on it and that causes the bottom eyelid to droop. My eye doctor wants to do a punctuplasty (widen the tear duct) so it will drain better. He also wants to do Ectropion Repair but my plastic surgeon thinks I should wait longer. I may eventually get the gold weight out of my eye because I can blink very well now. So I was about 10 months out before I noticed movement. Had I listened to my ENT surgeon. They would have already cut my facial nerve at 6 months post op with a 12/7 because he said it was not likely at all I would get any movement back. I didn't listen and consulted with others who told me to wait at least a year. Goes to show you that we are all unique. I will say one thing though...take it for what it is worth...I pretty much stayed inside socially isolated for the ten months but when I started getting out in the sun the last couple of months that is when my movement started. I am a firm believer that sun exposer can heal many things and keep you healthy... just not too much sun.
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I had a 3.5 cm tumor removed on 9-6-05, so it's been almost 4 years now. I got the most movement returning around 18 months, but I continue to get more movenent. It's just at a really slow place. I can make a decent open mouthed smile now. It's most noticeable when I try to talk and smile at the same time.
Jean
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Wow Samanatha, :)
That is an amazing story.
Thanks for sharing
DHM
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Hi -- i am only 4 months out and i have no movement in my eyelid. My question is -- has anyone who did see improvement 6-12 months out experience involuntary movement in their cheeks and forehead? If i pinch my face, splash hot water, or vigorously rub lotion on my face it will scrunch over, etc but i cannot control it. I was hoping this was a good sign.
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At probably about the same time as you, I would have my lower lip pull down after I rubbed it as you described. It would then slowly relax back up into it's immobile place. I think that is similar to what you are describing. I didn't have it anywhere that you describe.
I mixed up my letters in my prior response. I was a grade 6 (VI) right after surgery.
I have to think that what you are experiencing is a good sign. Even if the movement is not controlled, there must be something happening with your nerves.
Samantha
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Did anyone recommend that you do that daily to make your face move? will that speed healing?
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This is an encouraging topic!!
I will be 5 months post-op tomorrow and have right-sided facial paralysis. I think it is grade V, but not positive.
When my face is resting, it looks virtually symmetrical, except one eye looks a wee bit more open.
About a month after surgery I was able to press my lips together, which I couldn't do immediately post-op (I'm a lip balm fiend, so this is important!) Other than that I haven't seen any changes; of course my family often tells me "Oh you're looking much better", but thankfully my husband doesn't patronize me in this way LOL
My surgeon recommended the gold weight to me 2 weeks post-op, but being determined to "get better on my own", I opted not to get it (makes no sense, I know). I've now opted to get it b/c not being able to fully blink or produce tears is really taking it's toll on me. I have to wait until Oct. for the gold-weight, but am hoping to get in sooner.
I can't wait until I can smile again, before surgery I always said "I don't care about facial paralysis." And ultimately, it's not even that bad... but looking like myself again would be pretty sweet :)
So, happy to read that people are still seeing results years after surgery, I'm very encouraged!
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Hi Lyssa and welcome!
I am a HUGE fan of the gold weight and the procedure is VERY simple - to implant or remove and so if you do get better it is easily reversed. HOWEVER, lots of people that are getting movement back opt for a TEMPORARY weight that you just stick on your eyelid - you might want to check into this BEFORE you have more surgery! PM me if you have any questions!
K
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6 - 12 months for me
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3.7 cm removed Aug 08. 11 months of sociial isolation for me. Movement started at 11 months for me. I can slightly move my tendon that pulls in the middle of my paralyzed side and see it pull and slightly move my lip. I feel a lot of movement underneath.I don't know what to do because I was told different outcomes and direction by different doctors. My facial nerve was not cut. Had I listened to my ent they would have already done a 12/7 at 6 months. Glad I did not listen but don't know what to do..My eyebrow moves a little bit also. I hope I get more. Now my plastic surgeon says that I don't know what I am getting back but I will not need surgery. Waiting ....
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23 months ... almost the 2-year anniversary post op ... and in the upper lip I have finally gained some movement ... and controlled movement yet. I also can wink the previously paralyzed eye with less cheek involvement now (ie the weird synkenisis is less obvious)
Healing happens at a snail's pace... nevertheless it is still happening...
So RSteph- know that more healing can still happen for you.
DHM
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It's hard to tell with synkinesis. The actual paralysis went away at 4 months. But the weird movements started at five months. With three round of Botox, the only real diffence I found came at about 18 months when my mouth stopped turning up into a sneer in the bright sunlight and when I could drink through a straw normally. It still doesn't feel right when I try to smile. It's like I got punched in my AN side of my face. And when I try to do something about it, my neck muscles contort into spasms. Still waiting for that magic day when I feel normal.
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I'm not quite 8 months out now. Can smile pretty darn good, and when I smile my cheek lifts really well and my lower eyelid is starting to lift and crinkle a little bit. I told my hubby I never thought I'd be so happy to see laugh lines. LOL I still can't raise my eyebrow, but it feels like it wants to move and the accupuncture point in the eyebrow is SORE as heck. (and we're on hiatus from accupuncture treatment for the whole month of July, so it's not from being poked) My eye is still weird looking and has a dark circle under it, but not as bad as it was. I can make tears, but they're not consistent. I'm having more trouble drinking out of certain glasses than I was before I could smile so good. But drinking out of bottles and cans is easier. Not sure what that's about.
Vonda
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I am just starting to get some movement back in my mouth and I've notice drinking problems too. I was doing so well with a glass before my mouth started moving. Now I'm back to dribbling. I am also having a hard time with swishing mouthwash. I used to be able to keep it in my mouth, mostly, now I'm back to being a mess again. Why is that??
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epdjon,
Cyber HUGS!
Know I had this too once the movement returned ... it is because the muscles are weak from the period of no action. I can now eat and drink fine. I bought a Sigg bottle for water with a toddler cap. (The Paddington Bear logo makes good lunchroom conversation). I suggest that if you can practice eating in front of a mirror ( this was a shocker for me when I first did this and saw the abnormal movements) ... as this will give you feed back so you can retrain your facial muscles.
Are you seeing a neuro-muscular facial retraining therapist?
Know that I can now drive and sip a Latte at the same time... I can even ride a bike and chew gun at the same time.
Recovery does happen. It will come slowly... at snails pace ... but slowly.
Hang in there.
DHM
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Thansk, it's good to know someone else has had the same problems and overcome them. I start with the neurofacial retraining on the 27th. It's taken over a month to get into this program because this therapist is the only one in town, and it's a rather large town!
I'm almost scared to eat in front of a mirror. I know from the looks of others that isn't not pretty. But I will try it and see if i can start some self-help before my real therapy starts. I'm game for anything at this point. It's so disappointing to lose ground just when you are starting to make progress. But I will be drinking out of a cup again.
Here's another weird thing that started happening during the week. Now my weak AN side of my mouth, that used to droop, is now HIGHER than the normal side. The AN side of my mouth is starting to have that permanent smile look kind of like the Joker in Bateman. What next??
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Here's another weird thing that started happening during the week. Now my weak AN side of my mouth, that used to droop, is now HIGHER than the normal side. The AN side of my mouth is starting to have that permanent smile look kind of like the Joker in Bateman. What next??
Epodjn,
In reading your reply I am sad to say you are showing the early signs of "synkenisis". The nerves have cross-wired … the smile crease on the palsy side is one of these signs. Your muscles are becoming hypertonic. The sooner your therapist sees you – the better. In the mean time do NOT message that area but just apply heat when the face starts too get tight. Doing the wrong messages, without proper guidance, can make this worse.
These links explains "synkenisis"
http://www.answers.com/topic/facial-synkinesis
&
http://en.wikipedia.org/wiki/Synkinesis
Here is the bells palsy website on this
http://www.bellspalsy.ws/symptoms.htm
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http://www.bellspalsy.ws/residual.htm
What can be done?
http://ophth.wisc.edu/publications/fs_summer_04.pdf
MORE HUGS
DHM
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Thank goodness i start therapy on Monday. It's getting worse. Of course, like with all nerve stuff, it's slow, but day by day I see difference that I don't like. I'm grateful for the movement but I hope with therapy to get it under control so I can move my face the way I want, not this weird way. Thanks DHM, for your continued support. I feel like you are always there and know just what I'm going through, and have good advice. Thanks for the links!
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Thanks DHM, for your continued support. I feel like you are always there and know just what I'm going through, and have good advice. Thanks for the links!
Hey you are most welcome... that is what the ANA is all about.
Sorry for the delayed reply here- I just got back from Crater Lake... and was off line and camping... (Know that life resumes!)
Hang in there and keep us posted on your progress.
DHM
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Crater lake is such a beautiful place. We went there when I was a kid. We are avid campers. We spend our weekend at my dad's property in the Unita's. It was so nice to get out of the heat. I started my therapy on Monday and right away she showed me what I needed to work on to correct my drinking problem. I've been doing the exercises for about 30 minutes a day and can see a difference already!! And the "joker-ish" look is getting better too!
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. . . right away she showed me what I needed to work on to correct my drinking problem.
that struck me as funny.
Sara
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That is funny . . . . .and I didn't even realize it when I typed it. But seriously, I had progressed from being able to only drink from a straw to drinking from most anything. Then when the regeneration started my face started changing and I was back to the straw. Today I drank a whole glass of juice from a glass with no dribbles. Woohoo!!! Therapy is really working (Isn't it funny the things we celebrate??)
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Epodgyn,
What does your therapist have you do to help you drink better? I'd could really use some tips. My current method is to hold up the corner of my mouth with my finger. I'm sure it looks rather strange. If I don't do that it tends to dribble out the AN side. I have no feeliing there either so I don't always realize it's dripping until it's on my shirt.
Thanks,
Jean
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I was wonder that too today when I couldn't drink from a straw. Since my mouth has started moving, it is now higher than the other side and I am also having a "drinking problem." ;)
Samantha
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For Jean, Samantha, and anyone else with a drinking problem, here is what my therapist had me do. While looking in a mirror, hold your mouth as symetrical as possible. With your mouth closed and with your check relaxed, here's the tricky part, pull your bottom lip downward using only your lip muscles. Jean, if you don't have any feeling or signs of nerve regeneration this probably won't work for you. Samantha, your dribble problem sounds like mine. It was caused because I was tensing my check muscles and it was making the corner of my mouth pull up leaving a gap for water or whatever to dribble out. My face was doing the same thing as your was. My mouth was pulling up more and more each day. I learned it was because when I was stressed I tensed up that check muscle and it cause my mouth to look unsymetrical even at rest. It's really tricky to learn to relax it during the day. I have to think about it all the time. But I can see such a difference when I do. If you haven't had any neuromuscular therapy I would highly recommend it. I learned so much the first session!!! It has already made a diffrence in my life. My face was feeling so tight and uncomfortable and I didn't know how to relax it. With massage and the right exercise my face is starting to feel somewhat normal again, at least not like I've been wearing a mud mask too long!! I can't say enough about this therapy. PM me if you need help finding a therapist or help with insurance. Mine fought it at first but now they are paying.