ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Karen on July 19, 2007, 07:35:29 pm
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Has any one had any plastic surgery to lift up the corner of their mouth? I have had the 12/7 done and can smile a closed mouth smile pretty good, but my left side droops just a little bit even when I am not smiling. Just wondering about some kind of plastic surgery. Also does any one else have trouble with their lips constantly being chapped and red? My left side is numb and my lips always seem red abd sometimes puffy. Thanks Karen
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err yes is the answer
There maybe a dozen ways to fix/improve the situation
I guess the starting point is - do you still have face/nerve function
on the down side - has this been checked ?
I mention this because nerve re-generation may be an answer
In terms of surgery my suggestion is its time to start some
research - I found quite differing opions in terms of what
might work and what it might cost - this in a "National Health Service"
With the OP approach - its worth to think about how many
- and how long - each OP takes about 6 mths for the new
to settledown.
Best to seek out the specialists and get opions ?
Good Luck
Tony
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Hi Karen: I've started looking into options for the future. I recently went to a plastic surgeon - he & the surgeon who did my gold weight both recommended I go to Dr. Julia Terzis for facial reanimation - she's in Norfolk Virginia. I have also, through research found a Dr. Michael Sachs who does facial reanimation - he's in NYC. I'm still having EMG's done as there is a little bit of nerve generation, but I have no movement as of yet. So, Instead of having the 7-12 jump, I'm looking into a cross graft of the facial nerve & muscle transfer - still haven't decided. You may want to google both docs I mentioned - they have before & after pictures for facial reanimation. RE: chapped lips - mine were horribly chapped - I use Vaseline extra strength nighttime, it's in a pink/purplish tube - this has done the trick. I wish you all the best Karen, Nancy
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HI
I am new to this so I hope you get this. After 7 years I still have pretty much total palsy.Closer to post-op I inquired about plastic surgery also. they first wanted to test my facial nerves to see if nerve graphing was a possibility. It wasn't for me but I was told it is very critical to get the ball rolling right away for that procedure. As for plastic surgery I have only researched a small amount because of $$$ but I came up with the name Elliot Rose. I believe he has a web page with before and after pictures. As for chapped lips I still fight it all the time. I don't know why it is a problem. Mine are chapped mostly on the lower lip on the surgery side the most. I hve tried every thing. I use straight up vaseline at night and blistex in the blue jar during the day. I'm sure everyone has thier own preferences but I am still open for options too. I hope your recovery goes well. Keep a good attitude some things with nerve damage mend very very slow. Have you been to a facial physical therapist. Also some people use some typef electrolysis. I actually bought an Electrosage 8. I,m not sure of the improvement because I used it religously for about three months. I am not very patient, I wanted to see overnight miracles but it just doesn't work that way. Good Luck with everything and keep researching and don't stop asking questions.
Mari
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Hi Mari, you mentioned chapped lips.... this may be worth a try if you wear lipstick at all (maybe you don't so then I'd say ignore this).... but I found that wearing one of those lipsticks that comes in liquid form in a wand with a clear liquid gloss on the other ened that you apply after the lipstick does help with that as of course at least 8 glasses of water a day and an sp sun block if you don't wear lipstick. The dry eye etc that some Aners get and the dry lips may be part and parcel of the same thing I don't know....
Perhaps we should have a subsection on this board that is for tips on how to deal with the littler things as after An when one has a bunch of them it could get really annoying and tiresome etc.... there have been plenty of tips scattered throughout here that have helped me over the last almost two years.....
All the best in your search for answers for the rest with the electro helps....
Often fast answers take a bit of time i guess.
take care,
windsong
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Hi Mari: I have decided on facial reanimation with Dr. Patrick Byrnes at Johns Hopkins - I'll still have right sided facial paralysis, but at least I'll look 'normal' at rest. Too scared to do anymore real invasive surgeries like nerve grafts.
I'm a little concerned when you say your skin is peeling only in a certain area of your lips - maybe you should check with a dermatologist.
All the best Mari, Nancy
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Thanks for the reply. Yeah I have seen the dermotologist. My paralysis affects everything on the left side. No tears, sinus poblems, many more. But to get to the point the doc says the dry lips are basically lack of saliva production. The left side is dryer and crazy enough with 1/2 tounge paralysis it is no problem licking the upper lip, I guess we all do these things uncontiously but I have to remember to contiously make an effort remember to keep my lips conditioned or to lick the bottom left intentionally and I guess It is just not in my routine It looks quite awkward too. Sorry that was me making a short story long. I'm glad you don't have to deal with headaches and all good stuff. sounds like our surgeries were similiar only on opposite sides. What was your tumor size? Mine was 2cmx3cm. Hope you are doing well. Oh about the reanimation surgery. Surely it is not covered by insurance. Do you know the cost? From what I have heard John Hopkins would definately be the place to go. Where is that located? I'm in neverland (Kansas).
Later,
Mari
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Hi there Mari: My tumor was a full 2 cm. The cheek sling will be covered at 70% (out of network); as for the rest, it will be a fight with the insurance company. I'm figuring on paying approx $40 - 50K when I get the bill (I WAS saving for a new car, but I'd rather have a new face & drive my car of 11 years!) - so I'll also have to write out a home equity check for whatever the balance after my savings is used up. Johns Hopkins is in Baltimore, Maryland. I'll have to stay there 7 -10 days after surgery, then recuperate at home. My initial visit is Oct. 3rd (& it can't get here soon enough!!!)
Always good thoughts, Nancy
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I haven't been on this forum since I was three weeks post-op, not for an acoustic neuroma, but for a (surprise!) facial nerve neuroma. What fun the past year has been! Yes, I have facial paralysis (my surgeons had to sever the nerve and perform a graft), incomplete lid closure, dry eye, balance issues, memory issues - everything. The other day I fell while bending over to pick up a piece of paper - crashed into the treadmill and bruised myself up pretty well. I teach 10th grade art (a tough job if you're in good shape; absolutely bone-numbingly exhausting if you're not) and most of the time simply cannot hear my students; I have partial hearing in the affected side but it is tinny, distorted. My quality of life is decidedly not what it was pre-op, but inasmuch as I am sneaking up on my one-year surgery milestone, and have a decision to make about more surgery to fix my droopy face, I thought I'd see what kinds of procedures have worked for others and what should be avoided like the plague. I don't need any more problems, that's for sure! I had great surgeons, and would recommend them to anyone, however, I don't think I was in any way prepared for the reality of life after facial nerve surgery. I haven't been able to connect with anyone who had the kind of tumor I did; if anyone knows of other facial nerve tumor patients, I'd love to talk with them!
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Hi hollyjo: My facial nerve was also cut & reanastamosed also. I was told by Dr. Byrne that the nerve grafts really work best for the 'younger' patients - I'm 15 1/2 months with no signs of regenerating. In a post called 'plastic surgery' under this facial issues, I recently decided to go with Dr. Byrne at Johns Hopkins for a Temporalis Tendon Transfer(T3) - I'll have a closed mouth smile when I bite down; will still have paralysis, but I will look 'normal' - he'll also do a facelift, browlift, eyelid work, etc.
I still have balance issues, certainly not as bad as when 1st post op; when I have to bend down I squat to pick soemething up, if I just bent at the waist I'd probably end up going foward also! - not fun. I also have NO ENERGY, seems to have gotten worse - by the time I get home from work I'm practically crying from the fatigue, I feel like my life has been taken away from me. I use to take 'active' vacations a few times a year - I want to get back to the old me... I also wasn't prepared for any of this post op mess - I WAS told about it by the surgeons, but who thinks it will happen to them? - 5% chance??? Well, I'm one of the 5%. The eye issues are awful - constantly putting in lubricant, difficulty seeing for work, freaking out whenever an eyelash lands in my eye & trying to get it out. I just bought Ocusoft eye cleanser (thanks 4!) - over a year of lubricant attached to my eyelashes - I can't begin to tell you the shape my eyelashes are in - hope the stuff works! - I'll give anything a try! Well, that's that, what can we do but keep moving foward & hope our future decisions will make this AN business easier to live with.
Take care, Nancy
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Has anyone had a success nerve graft out there? What is considered young NancyAnn? This is a nightmare on a good day. How long after a nerve graft do you have to wait for plastic surgery? Enquiring minds want to now!!
Anne Marie
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Note to Nancy :
I guess it may still take some time for you
I saw that the dry eye issue is still ongoing
so a few suggestions if I may
Firstly in terms of the "eye fix it kit"
I have 2-3 sets at any one time
- I am never more than 3 feet from them
In case of a complete wipeout
ie a raw eye that just wont settle down
I carry the night lube - and use in an emergency.
I wear either sunglasses or clear plano (plain glass) glasses
this cuts down the draft and keeps the fluid longer.
If its more than this - then maybe look at the lid/lift option
a good eye surgen can check how well your eye
shuts - mine left a gap which dried out and got sore
Surgery was used to lift the lid by about 5mm
and get a better fit when shut
The "new" lid holds the fluid better
Id say a 75% improvement ?
Hope this helps
Tony
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Hi Anne Marie: Glad to hear the Naproxen is helping with your facial swelling. The one problem I know of with non-steroidal antiiflammatory meds (you probably do too) is stomach problems, ulcer, GI bleeds - when on them for prolonged periods & at high doses - taking food with it should help - don't know how long you can stay on them on a routine basis. As far as the nerve graft, Chris (in his 20's) & Denise (don't know how old but maybe 30's - 40's?) are having great results, I think it's too early to tell yet for Taylor. It takes maybe about a year to see improvement? Don't know how soon you can have facial surgery after that - you probably need to wait some time (anesthesia build up?, giving your body time to heal) - these are better answered by the docs. I think because of my age (51) + being 15+ months out, I'm a better candidate for the facial surgery (though my otoneurologist would disagree). Seems I've gotten conflicting answers from my docs (not the 1st time, huh?)
Always good thoughts, Nancy
Hey Tony - I had the lateral tarsal sling done twice for my eye (once when they put in the gold weight & again when they took it out) because the darn gravity keeps pulling the lower lid down. I'm hoping when Dr. Byrne puts in the platinum weight & does the face stuff, this should finally relieve the eye issues (or at least make it better!). Yeah, I've always got the lubricant with me too...
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Reply to Nancy
1) As you say - you just about had every OP in the book
- never easy for sure (I am having the same smile "refit" in Dec 2007)
Regards the dry eye - there is another approach
Forgive the language here - you have a "blinking problem"
Well I guess many of us do ...so..
The normal blink function is 20-22 times per minute
- in non-OPs if they watch TV, the computer, or drive alot,
this can fall to 7-8 times per minute - and they get...wait for it...
Sore and red eyes (sound familiar?)
The blink function acts to wash water over the eye
- much like the wash-wipe function on the car.
(the tear evaporates in 3-5 secs depending on conditions)
Now if you have no "natural" blink function
then you are left with just the manual version
It takes some time to learn to make a mental effort
to keep regular blinks coming - but the eye does get better
(it follows the eye must shut properly, hence the weights and lifts etc)
2) Some neat glasses can help a bit to reduce any concerns
re appearence - folk tend to see the glasses first
3) There is a book "The Loss of Face" Diane Farragher(?)
She has been working in a face-rebuild clinic for 10-20 yrs or so
Talks about all the issues etc - I think you can review it on the net
Good luck with your OP
Best Regards
Tony
(p.s. mines no 9 or 10 - lost count somewhere..)
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Hi Tony: my opthomologist told me the same thing re: remember to blink; because I have the 'bell's phenomenon', when I blink my eye rolls up & the cornea is protected. Thanks for the reminder.
Wishing you much success on your upcoming surgery too!!
Always good thoughts, Nancy
ps: I had heard of that book somewhere on here awhile ago....
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When I met with my neuro Dr yesterday to review my MRI I told him I wanted my good eye to be lifted to match my bad eye (side of face where there is paralysis). He said he couldn't see anything wrong with my face and that I looked good (that was his words). I told him some folks have had botox. I said I was considering that but after being around my friends who have had botox (they don't need it but they think they do) they look sorta like they have no facial expression so now I am reconsidering that for a while. In any event, I want to look into possibly plastic surgery, just not sure what they would do. So I am also curious as to what folks on this forum have done. In addition, my lips are not chapped but very very dry. I wear the lipstick in a tub that looks like mascara. It has a wand, I find that it moisturizes and looks good too. Initially after my surgery I kept chap stick (really strong kind) next to me at all times but over time it has gotten a little better.
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Hi TP: I haven't had the plastic surgery yet, but I am going to Dr. Patrick Byrne at Johns Hopkins - he does alot of work on people with facial paralysis - you can google his name & go to his before/after pictures to get an idea. I'll be able to really see the results after about 4 months. My surgery date is 11/20.
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Hi All, I dont get dry lips my problem was kind of a snarl like my muscles I guess tightened up but they gave me Botox shots. Maybe that would work reverse I dont know but Idea. My insurance would not pay for any cosmetic surgery. Maybe yours will?????? :(
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Hi
I don't know were your from but here in canada (Quebec) my doctor told me it was standar to do surgery to replace everything at it's rightful place after An surgery. He told me that I should prepare my self for at least 1 to 2 surgeries a couple of months after the AN surgery to replace my facal nerve and recover a full smille. And all of it paid by the health insurance.
I also know a woman here in my region that had it done a few months ago and everything seems to be going just great.
good luck whit your recherche hope you find an anwser. ;)
Julie
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Hi everyone, I am new to the site, I had surgery on my face about 7 months ago. I had a gold plate put in my eye lid, my bottom lid lifted, and my rt cheeck lifted. Only thing is I still can't smile, I haven't been able to smile since 1991 its been a long time. I am still trying to cope. I live in the Phila area, my last surgery was at jefferson hosp. by a Dr. Pribitkin. He did wonderful job. But I am still hoping for a smile. If anyone has some advice please share. :-\
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Hi Hopeful: I just answered you in a personal message. As you can see from my reply a few people back, I'm having surgery 11/20 with Dr. Patrick Byrne. Please google his name & look at the before/after pictures. Also google temporalis tendon transfer for information about this wonderful new procedure for those of us with chronic facial paralysis.
Always good thoughts, Nancy
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Nancy, if I recall you were having surgery last week. Please let us know how you are doing? I have been thinking about you and send you warm wishes!
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Has anyone heard from Nancy Ann yet?
She had her facial surgery on Nov 20 ... today being the 28th.
She has been on my mind all week...
4
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I have been wondering the same. NANCY - ARE YOU OK? WE ARE THINKING OF YOU!!
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Hi from a newbie on the site.
There were a lot of topics covered in this question, so I'll try to address some of them from my experience:
1. Help for the eye - my right eye does not close, and early on (probably 2-3 years after surgery), I had one stitch done to raise my lower lid and about one year later, another stitch done. This was done by an Opthamalogist as outpatient surgery. It has definitely helped. The healing was fast. Another thing that I had done about 2 years ago (at the suggestion of another Opthamalogist) was a "plug" in the tear duct. It's very easily placed (can't see it) and helps hold the artificial tears in longer without spilling out. Another thing that helps me is my "crocodile tears" when I eat - I have to be hungry though! This is pretty embarrassing at restaurants, but it's just another inconvenience and creates interesting dinner conversation! Lubricant is a must every night and I don't bother removing all of it in the morning because it helps keep the eye moist during the day. Eye makeup is impossible because of this. I highly recommend the sunglasses too and I wear regular glasses during the day - helps keep things out of the eyes. I basically "baby" my eye and it has paid off.
2. I was 15 when I had my AN removed, had zero movement on the right side of the face so they decided to do a nerve graft (to my shoulder/neck muscle) about a year after the surgery. After a few months, it gave me a little movement with much concentration. Because I was so young, I really didn't pay attention to the technical names of the surgeries and cannot quote the terms as fluently as others on this site. I have lived with this limited (very unsatisfactory) movement for 40+ years until I found Diana Farragher in England last summer. I've started using the Neuro 4 transmitter and have seen some improvement. It's a really long, arduous process though. You can find more information on her website and I definitely recommend her book "Loss of Face". www.dianafarragher.co.uk.
Nancy Ann - I admire your spunk and am in awe of all of the information that you provide to the others. I'm glad that the T3 surgery worked for you. Because I had some movement (after the shoulder/facial anastamosis in 1967), I was always reluctant to have them "cut" again on me.
Best wishes to all,
Jan D
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Jan D,
Re
"You can find more information on her website and I definitely recommend her book "Loss of Face". www.dianafarragher.co.uk."
Where can us ,living in the USA, get a hold of this book... any ideas? I'd love to read it.
Cheers,
4
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Dear "4" and all -
You can order the book on her website. She takes credit cards :)
Be prepared with a box of tissues when you read it though!
Happy Valentines Day!
Jan D