ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Suu on March 24, 2011, 06:48:08 pm
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Hello wonderful people
I have full left facial palsy and the docs wants to try this procedure to cheer me up :D
I haven't got a date for mine yet but figuring it to be in the next couple of months.
How scary is the first few weeks after having a 12/7 graft?
How long in hospital?
Is there much pain?
How long did it take to get any sort of movement?
Are you ever able to smile with your teeth showing? (big smile)
Can you laugh without looking like some weird act from a circus?
Do the people around you know that you are using your tongue to smile? Is it obvious?
And do you have to use your tongue forever to achieve a smile?
Kind wishes to all
Suu
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quick answers:
not
1 day
not for me - but I don't feel that side!!
long time but less than 1 year
no teeth! :o(
don't know - can't see myself!
no - NOT obvious
yes - until I had the T3
K ;D
*answers influenced by little wine*
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Suu,
Here's my answers. LORI will hopefully "jump on the bandwagon" with her answers.
1.
How scary is the first few weeks after having a 12/7 graft?
It wasn't! I had an incision along the side of my neck which they tried to blend in with a skin crease. I was walking and doing my normal business....
2.How long in hospital?
Overnight. They took the drain out of the side of the neck the next morning and sent me home. Depending on the drainage, you may stay an extra day....
3.Is there much pain?
I can't recall much pain at all. This surgery, for me, was THE EASIEST of all my multiple surgeries :)
4.How long did it take to get any sort of movement?
Umm, some upper cheek movement for me, but basically, and unfortunately I had "marginal" results. My situation is complex though. The facial nerve branches were affected too much with the original tumor......YOU should have better results...
5.Are you ever able to smile with your teeth showing? (big smile)
Probably not. Closed lip is nice though, you get used to it.
6.Can you laugh without looking like some weird act from a circus?
Yes you can laugh and you may still look like a little weird. All about the "new" you.
7.Do the people around you know that you are using your tongue to smile? Is it obvious?
Since I had marginal results, never did get to try that! Sorry....
8.Do the people around you know that you are using your tongue to smile? Is it obvious?
Can't answer that one either.
Good luck with the 12/7! Give it a good 18 months ( I know that sounds forever, but I waited that long) and if the results aren't good, there's always other options....
Maureen :)
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Here I am! ;D
I was in the hospital overnight, but I had my surgery mid-afternoon. My doctor told me that if I'd had it first thing in the morning and I didn't have much drainage, I could have gone home that night. I don't recall having much pain. Maybe discomfort would describe it better, but since I don't remember, it probably wasn't too bad.
I didn't find it scary either before or after. My incision is very well hidden and I came home with the dissolvable stitches and steri-strips. Since my hair is about shoulder length, you really couldn't even notice it. I took it easy the first couple of days, but then I was back to my usual routine.
I started to get little movements around 3 months, but I was told not to expect anything until 6 months. I'm at almost 2 1/2 years now and I'm still seeing improvements. I don't have a big, toothy smile, but like Moe said, a closed mouth smile is just fine with me. I don't know what I look like when I laugh, to be honest with you, but I don't think I look and more weird than usual! ;) I guess I'll have to go look in the mirror and tell myself a joke.
No one can tell my tongue is moving when I smile, and really, after a while, you don't notice it either. It just becomes a natural thing to do and you don't think about it. It's not like you have to stick it all the way out and touch your nose with it - all I have to do is put the tip of my tongue against the back of my front teeth - it's a very subtle movement.
Don't worry too much about it. Think positive!
Lori
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Thanks everyone.
I like to have as much information as possible so there are no shocks ;D
I have no doubt that any questions in the future will be answered with or without the help of wine LMBO
Love to you all
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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I have a date! 16th of June - less than 3 weeks.
I'm also having a 'sling' put in. Although I haven't read up about this yet, I'm sure it's to bring my face up? Am I right? :) Will this cause anything to change from the original questions I asked here?
My doctor rang me himself (very unusual over here for a doc to do this so I feel rather special ;D) and asked if I was ready to smile yet? The last nerve conduction study (NCS), which were done on Monday 23rd, all came back negative for messages getting to the facial nerve again.
So my bag is packed and I'm ready to begin yet another new kind of normal.
Hubby has booked us on a cruise!! We go for a 3 week holiday on the 16th of November around New Zealand. I hope to be mona-smiling my guts out by then! :-*
Love and best wishes to all,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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Hi Suu,
Good news that you get to move forward to get the 12/7. Don't know much about the "sling" I would imagine it would help to bring that side up, as you said, and then the 12/7 will hopefully add the movement.
But it will take months of course for the 12/7 to start showing results, and as Lori said, she continues to see improvement.
Keep the faith, it is a long road, I know!
That is so cool about the holiday to New Zealand. Wow. I'm heading out for an Alaskan inner passage cruise this week with 3 of my sisters for my 50th birthday, so gotta run :D
Maureen
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God luck I starting to get movment and its been 6 mounths but people have notice with the tone and im def happy with that..goood luck
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Maureen - Happy cruising and will send a special greeting in the other part of the site for you.
I was kind of hoping for immediate results but deep down, after reading here, I know that it's time I've got to be patient for. I will do everything that the doc recommends to get that lip working!
I'm looking around the site again (so what's new? :)) and will have a read of Lori's posts first.
Kim - That's very good news about your face moving at 6 months. Please let us know more as you recover?
Thanks for all the help,
♥ ´)
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(,.•´ (.♥ •´ *Suu xxoo
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Good luck Suujoy - you are a real trooper! I hope the surgery goes well and that you come out with flying colours! I'm sure you will!
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UPDATE:
As you know dear Constant Reader...
I had a 4cm Acoustic Neuroma taken out of the left side of my head last August and was in hospital for weeks while they tried to stop CSF leaks.
My facial nerve had been stretched straight over the top of the AN and, although it was left intact, the stretching seemed to have caused irreversible facial palsy (drooping of the left side of the face from eye to mouth) and also left me with permanent left side deafness.
I was to have a 12/7 nerve graft done next week after nerve conduction studies showed that no messages at all were getting to the facial nerve.
I am also to have a 'sling' made from a tendon in my leg and put into my face to lift it so it's at least symetrical.
Today was my pre-op check with ENT surgeon, Dr Robert Eisenberg.
Dr Rob saw movement in my cheek!!!!
I’m still having the sling put in to lift my face back up but the facial nerve looks like it may – just may – be coming back. (http://i12.photobucket.com/albums/a228/Joshua1/Baby.gif) He explained that it takes around 1mm a month for healing of the stretched bit and it was pretty darn stretched. I was scared about waiting the extra 6 months for the 12/7 graft but he assured me that the op can be done within 18mths to 2yrs
So…. I get to still have my face rearranged so I can go on the cruise with a lot more gusto and self-image, and I don’t mind waiting the couple of months more to see if I am going to be fully (ab) normal again by the new year.
(http://i12.photobucket.com/albums/a228/Joshua1/gobsmacked.gif)
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OMG!!!!!!!!!!! FAB news!!!!!!!!!! You know the mantra.... "day by day, inch by inch (or in this case... mm by mm....), but all the same....... time is helping to do the trick! Hang in there! :)
Phyl
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This is INCREDIBLE news!! I'm so excited for you! But I don't understand why they would still do the sling if there is a chance it could come back on it's own...a sling doesn't sound reversible... ???
K ;D
*doing the happy dance with you!*
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Suu ~
Fantastic good news! Congratulations! :D
Jim
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But I don't understand why they would still do the sling if there is a chance it could come back on it's own...a sling doesn't sound reversible... ???
Hi Kabo - the sling is reverible although it may not need to be reversed. My muscles have wasted away and he's opted to do the following -
Static facial slings lift the midfacial region to a more neutral position, but are immobile, or static. In these cases, the face does not move, but does appear more natural as the corner of the mouth and nasolabial fold (the fold from the corner of the mouth to the nose) are restored. Surgically, there are several variations, the essential idea is that a material (tissue from my leg) is used to 'sling' the corner of the mouth and nasolabial fold into a more neutral position.
I still can't credit that the 2 nerve conduction tests showed nothing, but I'm extremely happy that they may have been wrong. Even if there is the slightest chance of nerve regeneration I've got the time to wait.
After this op it will take around 6 weeks for my face to settle down with the swelling all gone. I'm going to suck in my breath and take before, during, and after pics this time.
Just goes to show us that there's is always hope! (http://i12.photobucket.com/albums/a228/Joshua1/goal51.gif)
Bestest wishes,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu xxoo
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Suu, when I had the nerve conduction tests done, they also showed no movement. The technicians even repeated shocks several times in one area because the results were inconclusive. Or they were a bunch of sadists, I'm still not sure which.
At any rate, the next day I went to see the facial nerve specialist, who said he could detect a slight movement at the side of my nose. He advised me to wait for at least a year before making any decisions. Although I could not see the movement, I took his advice and he turned out to be right.
Best wishes for both your surgery and ongoing regeneration.
Sara
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Sara - It's comforting to know that the technicians do get it wrong and that the doctors can see a movement that we may miss. I'm hoping that he's right and all I can do is wait so that's what I'll do. I'm not as over anxious as I was prior to the AN surgery but I'll be paying more attention to the mirror from now on. :o
Bring on Thursday so I can get on with the waiting ;D ;D ;D
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Hi Suu
Just wondering how you are going - hope the surgery went well and that you are on the up!
Best regards
Jockieau
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Hi to all of the wonderful ANers here.
I can't sit so this will be pretty concise and I'll be back when the bruise goes down. (see pic)
Surgery for the sling went ahead on the 16th June 2011.
They took tendon, muscle, and fat from left thigh to transplant.
On the same night my leg suddenly 'blew up'! It was like someone was pumping it full of fluid. The pain was off the scale at 11!
What had happened was a bleed inside my leg. A haematoma. The doc was beside me within an hour (he must have flown in!) and told me what was going on, that I had to sleep sitting up, and he was going to put a drain in my leg. He started me on Clexane right away to prevent clotting. Since coming home I'm on 1/2 disprin.
Sorry to end this here but can't stand much longer. The blood had gone down into my knee and I'm seeing the doc again on Thursday.
I'm now game to put my pics up to remind myself that I can get through anything!
(http://img.photobucket.com/albums/v170/suujoy/suub4.png) THIS IS BEFORE (yes, I'm smiling ;D)
(http://img.photobucket.com/albums/v170/suujoy/suuafter2.png) THIS IS 10 DAYS POST-OP and YES!! I'M SMILING! ;D
(http://img.photobucket.com/albums/v170/suujoy/suuleg.png) OUCH!
I am so happy with the work done and won't be having the nerve graft done even if it doesn't reactivate itself. Too much has happened in such a short time and I don't want to test fate anymore.
I'm extremely happy to look in the mirror and don't mind the scars. My teeth cost me a lot of money and I can show them off again! :D :D :D
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Lovely! (all except the knee) Congratulations!
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Suu that is an amazing difference, you must be so happy - well done!!! Things are only going to get better now, I can feel it!
Hope the pain eases soon and you can just gad about with your new-beaut smile!
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Wow what a difference! You look great!
Sorry you had to go through the leg trauma. That is scarey stuff, but you survived. I bet that was a long surgery.
Interested to hear more when your leg gets better. I would imagine sitting at the computer is not good leg therapy.
Just curious if you can now independently lift that side of the face since the sling. Do you have to do anything to get that smile up? Pretty impressive pic for 10 days post op.
Keep healing!
Maureen
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Wow! Yes, that is impressive for 10 days post-op! What great news!
That is quite a colorful leg you have there! Ouch!!
Keep smiling!!
Lori
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I cant believe how amazzing you look...im sooo happy for you
It gives me hope :)
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Hello everyone. Thankyou so very much for being here.
Moe - No, the left side doesn't seem to move at all. I'm bringing the right side of my face up and it forms a natural smile.
There is a fairly deep scar in the crease of my cheek and a scar on my lip but I was told that the colour would improve and the swelling will go down slowly. I've bought new makeup and will put it on when I feel like it's healed enough.
Does anyone know how long after face surgery I can begin wearing makeup and do I need to put any special creams on my face now or in the future?
I'm pretty much against having the 12/7 graft done now. I've got enough battle scars :P
The sling looks to have pushed the bottom left lid up a bit and I'm not having to lube the eye. It rarely bothers me although I take the Lacri-lube with me just in case I need it.
My leg is still very bruised and the 2nd ultrasound I had on Thursday said that it's still 4cm deep and goes from upper thigh to knee. It's also infected so the doctor doubled the antibiotics for a week and I'm taking 1/2 aspirin daily to keep the blood thin to prevent DVTs.
I'm back to using my crutch (cuffed at elbow) and no more walker so that's another step forward.
Will be back soon to read up on how everyone's doing.
Love and hugs to all,
(¯`v´¯)
`•.¸.•´
¸.•´¸.•´¨) ¸.•¨)
(¸.•´ Suu xxoo
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Hi Suu,
thanks for the continued update. I am thinking once the incision has completely healed, you can start wearing make up. Kaybo probably knows. There are lots of special creams out there for scars/incisions. I can't remember the exact name. Good ole vitamin D comes to mind though. Just clip off the top of a gel cap and squeeze the vit out and put on the incision at night, but the incision has to be completely healed. Good luck :)
(¯`v´¯)
`•.¸.•´
¸.•´¸.•´¨) ¸.•¨)
(¸.•
Maureeen
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Suu~
glad you are doing so well. Even though I read the other day that Vitamin E isn't really suuposr to help, I have always used it for all my scars - like Moe said, you can clip the capsules or I found some E salve at GNC (chain here in US) that was much less work & less messy. Since the T3 scar was on my face, I did use some scar cream that I got from Dr Byrne. I can't put my had on it right now but I'm sure I could find out the name, if you'd like. It was a bit expensive (not outrageous) but you only used a tiny bit - it was so worth it - it worked great!!
As far as make-up goes, I guess I just really waited until everything was healed up really well...& then probably waited again!! I'm not a huge, everyday make-up wearer so I probably eased into it slow after a special occasion. I wear Bare Minerals powder make-up (base/foundation too) so I never really "rubbed" anything into it. I do rub on concealer now but it has been 3 years!
Don't know if that helped any!! If you need me to get something here & mail it, I'd be more than happy to do that for you! Let me know!
K ;D
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Glad you're doing well, but sorry to hear that leg is still giving you problems. Hope that gets better soon.
After I had my 12/7 my doctor said that once it was healed to just keep it moisturized as that would help the scar look better. He said it didn't really matter what I used as he hadn't seen any difference in using Vitamin E, Vaseline or whatever. I did use the Vitamin E capsules for a little while since I had them around anyway, but after that I just used the same stuff I use on my face. I looked at some of that specialty scar cream in the store one time, and maybe it was just the brand I looked at, but the only thing in there was sunscreen and some vitamin E. I didn't think I needed to pay $11 for a little tube of that since there was no miraculous healing ingredient there that wasn't already in my moisturizer anyway.
Happy to report that my scar healed beautifully. It isn't noticable at all. I am a beach bum in the summer and I was afraid that when I got tan, it would stand out more, but it doesn't. My new doctor here (at a teaching hospital) was actually calling some of the students in to show them how impressive my scar was. ;D Oh well, I guess it's nice to be good for something! So, in time I'm sure your scars will fade and not be noticeable too.
And as far as the makeup, I'll echo what the others have said - just wait until you're all healed and there are no open areas along the incision and then you should be good.
Happy healing!
Lori
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Hello everyone. I'm back. :D I've been lurking around on here but went through a kind of mini depression/anxiety thing so haven't been posting.
Only a few weeks after the massive haematoma I had to have a hip replacement on that side and it's all gone a bit wrong and I'm still on crutches.
I am so happy with the work done and won't be having the nerve graft done even if it doesn't reactivate itself. Too much has happened in such a short time and I don't want to test fate anymore.
Well there's suddenly more news.
I saw the specialist that took out my tumour, who fixed all the brain fluid leaks, and who also transferred the tendon into my face.
Seeing the facial nerve is definitely not going to regenerate I need another operation. The tendon op was to lift my face to give the nerve a shorter route to send signals and it's 'dropped' a bit and my nostril is closing again and my face sagging just a little bit.
I said that I'd rather just stay this way but there's a big reason he has to do a nerve jump from my tongue. If he doesn't do it then my muscles in my face will wither and the tendon may stretch and droop further.
There's only 8 more weeks to go before this opportunity wouldn't be viable as it has to be done within 2 years of the tumour coming out so he's booked me in for next Thursday the 9th Feb.
I'll have to learn to use my tongue to smile but I'll have movement back in my face and eye! He couldn't do it before because he was sure the facial nerve was going to regenerate signals.
So, there's my news. Sort of good but it doesn't stop the scaredness. :o
I promise to keep on coming back to help as I hope I was doing before.
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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BTW - hubby and I went on the cruise and had to get off and fly back. The rocking motion had me in bed on board for the first 3 days and on pills for the next 3 while waiting to get to a port with an airport. It didn't help that the carpet chosen on the ship had zig-zag lines running up it! Hanging on was difficult as there was only handrails on one side of everything and hubby and I use walking aids.
Doctor put it down to the lack of a middle ear for balance on a rough sea. :P
It was so rough that the pool was emptied after kids were being thrown into the sides of the pool by big waves!
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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Best wishes for a very successful graft next week. I'll keep you in my prayers.
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Thanks Saralynn. After re-reading about it I'm not as scared about pain, or postop complications. It sure eases one's mind to come here and be a part of the family again.
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
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Hi wonderful supporters.
I put a new post for the results here - http://www.anausa.org/smf/index.php?topic=16633.0 (http://www.anausa.org/smf/index.php?topic=16633.0)
I'm going to make a point of coming back more often in the hope that I can help and support others as I've been helped and supported.
Many thanks.
Suu xxoo