ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Kennystiebs on May 01, 2012, 07:54:15 pm
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Hey, I'm two days away from getting my 12/7 jump surgery. I have full facial paralysis on my AN side. I'm more nervous for this than my actual tumor surgery. I'm mainly concerned with my face looking worse than before this surgery. I know it's supposed to help and my doctor said I should do well with it. However, I've been reading about people who have had speech and swallowing problems. I don't want those. I can speak and swallow fine right now.Nor do I want scars all over my face. How good or bad is the scarring after surgery. I'm just wondering if this surgery is really worth it. I mean my face Is already bad enough as is I don't need more scarring,speech problems, and swallowing problems on top of that. If anyone could ease my mind it would be greatly appreciated.
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Scars.....there is none on my face, the scar is basically in the crease of my neck and isn't noticeable.
speech and swallowing.....at first I had some difficultly with both but the speech just got better over time, I only chew on the noneffective side and haven't any further problems with the chewing or swallowing than I did before the 7/12
I can understand being more nervous about this than the tumor surgery, you don't want to go through this to be no better for it, only time will tell and don't let fears stop you from doing what you already decided to do.
Best of luck for a speedy recovery
Kathleen
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Hi Kenny
I had my 12/7 nerve graft done in February. My hairdresser had to ask where the scar was. It runs in the small crease near the top of my ear, runs down the side of it and onto my neck.
Yes, I had a problem with the surgeon stressing my vagus nerve (controls speech and swallowing) but I've been through the gammit of things from having to drink thickened liquids and pureed foods and I'm now on normal fluids and minced foods.
I'm not going to tell you that it was a piece of cake to get through but I think I've handled it with grace and dignity to the point where my kids and grandkids know that I'm not needing to be watched 24 hours a day.
I had a facial sling put into my face last June to lift my face and mouth to a more natural position and I was more than happy not to have any other surgery but the doc only had a 2 year window to do the 12/7 graft or he'd have to do a different and more invasive surgery if it wasn't done within that time from surgery.
It takes about 12 months to see if there is any facial response from this graft and I have the time to wait and I look in the mirror daily and try to move something on the left side.
My speech is getting better and stronger every day and I'm expecting a full return of my pitch of speech although I don't expect to speak as clearly as I did previously.
I have always said that I will do my best as long as my family do their bit to listen intently and to speak on my hearing side so I don't always have to be the one to ask them to move or for me to move so I can hear them.
For me, this was what was recommended and my trust in my surgeon is high so I went for it.
Keep in mind that you have only that 2 years between the AN surgery and the 12/7 graft and it's always up to the individual whether or not to go ahead.
We can go through this together. Compare notes and talk/type about it so we may help others that come to the site with the same sorts of questions.
Good luck mate. I am sending all the best of wishes to you and hope the outcome is a good one.
Hugs,
Suu xxoo
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Hi Kenny,
I had translab in Oct. 2011 and was not "expecting" to need the 12/7 nerve graft but did in the end.. I however, did not have to wait or really have any choice in the matter as the Drs. told me the outcome of 11 hr translab surgery necessitated the graft.. I stayed in ICU from the Thurs surgery till Monday for the 12/7 surgery.. so no sweating it .....
I agree with others here that the scar should not be a worry,, 6 mo later it is hardly noticable, , they cut from the front of the ear down the side of my face along about two inches below the jaw on the neck,, it is in a WRINKLE,,, anyway, so pretty much not noticed.. I have speech issues only because face is numb and there is not much movement,, that would be with or without this surgery.. swallowing problems just slightly at times but I think that was more due to where tumor was affecting nerves/brain stem than the 12/7 surgery..
I would not sweat this surgery as the aim is to help you in the long run.. I would hope for SOME improvement vs a known NONE,, I have had a test last month ,EMG ?? I believe,, electro stimulation of nerve and there was VERY minimal movement at 5 mo but enough that Dr is certain graft took,, great!! So now he said it is just a matter of time for it to continue to heal,, it takes the cranial nerves 12-18 mo to heal.. but I already have way more movement than I did,, I do have some trouble talking but not much,, my eyebrow on that side will never work correctly and smile will not be symmetrical, but it is getting better,,
bottom line,, I would do it again,, even if given the choice this time,,, as I feel some hope of facial recovery is much better than NONE and knowing I would be "like this " forever...I know where you are in feeling you are "bad enough" cause it took me a while to resolve myself to this is me now,, but I think , rather KNOW that this surgery was good and wil be helpful.. I hold out hope each day for minor improvements.. good luck and hang in there,,,, jane PS.. it was a "breeze" compared to AN surgery....
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Had my surgery, my face is pretty swollen and I cant eat much. I have no problems with my tounge though which is good. My ear is pretty numb and can't feel it hardly. Question though, when I swallow it's almost as if I can feel the nerves moving on the side of my face. Does anyone have any experience with this. It doesn't hurt it's just a weird feeling like I can feel the nerves move. Overall though I'm hanging in there.
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So glad you're on the mend Kenny.
That feeling is similar to mine. I think it might be that your face is moving involuntarily when eating and you can feel it. I feel it mainly inside my mouth even though the left side of my tongue is numb and not working.
Please keep writing about the different things that are happening as they're so helpful to everyone who is going through the same things.
Keep on keeping on.
Suu xxoo
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How long untill the swelling goes down, I tired already of eating soft food, anytime timeline till I can start eating solid food. I'm eating baby food and soft things like soup and oatmeal. I really want a burger or some cake or anything solid really. Im not speaking for everyone here but this surgery might be more frustrating than my actual AN surgery.
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Also any problems with sore throat. Every time I swallow my throat hurts. I'm guessing from the breathing tube. It may be a combination of that and my neck being sore. How long before this subsides because this also makes it harder to eat.
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Kenny: Sorry I cannot remember how long the swelling took to go down, it's been a few years, I gonna guess maybe like 10 days, but I do remember it was often worse on getting up in the morning and this carried on for some time.
When you do start eating more solid food remember to chew on the non- affected side! (to this day if I chew on the affected side I choke and the food gets lost in there!)
As far as the sore throat I would have that checked out by your family doctor/GP to make sure you don't have thrush, I got thrush post-operatively from my first surgery and this would need to be treated to go away.
Kathleen
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Kenny,
Glad you are doing as well as you can expect at this point.. this is probably going to be a long recovery time with changes coming in small increments I am afraid... Dr told me to expect it to be 12 - 18 mo before I have "complete" recovery as that is how long it takes for cranial nerves to regenerate,,,, and at that it will never be "like it was" as far as eyebrow will not raise on that side and smile will not be symetrical probably,,,,,,,,patience is a very big part of this surgery.. I have had more pain, and side effects from this one than from the AN,, however,, I keep looking at the changes that are happening and movement I am seeing and feel it is worth having some degree of facial movement in the long run..
The tongue is now going to be "in charge" of movement in your face therefore as you "learn" to swallow and eat you will see your eye close and face move in accordance with the tongue movement on that side.. it can be frustrating to say the least, but that is how it is connected now. As the Dr said,, the tongue on that side will atrophy (?spelling) as time goes on and won't feel so "big" in your mouth,, if that makes sense to you,, I have noticed that it has begun to happen and I am more comfortable using my tongue to help move food to "good" side of mouth and helping with swallowing... I am about 7 mo out and most of the numbness on that side is gone although I still have some out toward the ear,, the ear is still numb but I believe that is AN related as I had translab and ear was pushed forward "out of the way" for that surgery.
Frozen yogurt was my best friend for several weeks,, the cooling and ease of swallowing it were wonderful at first.. I never really had a sore throat tho,, just could not coordinate tongue and swallowing at first.. Still I only chew on the "unaffected" side of my mouth and my tongue gets a workout each time I do eat.. it is a GREAT diet plan though, as I have lost 25 lbs so far.. as I eat smaller amounts and really don't eat anything that I have to chew much.. like meats,, pork, steak ,, all that "good" for ya stuff anyway,,, :).... I eat VERY slowly so as not to choke as swallowing is difficult but getting much easier. Of course I use a straw but even now I can drink slowly without one if need be,,just not hot coffee,,,,,I "dribble" some times, and always have a napkin around or tissue.. As far as the burger,,, it may be awhile before you can "manuveur" a burger or sandwich,, I still only eat things that I can eat off of a fork as I can not bite into a sandwich well as one side of mouth does not open wide enough,, if that makes sense,, but that is getting better too....
The swelling will go down with a few more weeks time.. I had my nerve graft 4 days after AN so I could not tell much what symptoms went with which surgery..... I noticed as the healing is taking place that the numbness and swelling subsided from my nose toward my ear,, if that makes sense,, like I said, I still have some of that along jawline and of course ear still numb...
I also noticed it was hard to turn my head because of the swelling and incision on side of neck/throat,, that will also go away in a few weeks,,
Sorry for the rambling,, but I wanted to try to explain that what you are experiencing is normal I believe for this surgery and you really do have to just be patient,, I have learned A LOT of patience in that last few months,, there really is NOT anything else you can do to speed this part along ,, it is just the time it takes for nerves to heal... sorry for that bad news,, but unlike the AN part where most of it is in the brain,, this has affected your "mouth" and eating and facial feelings so it is more noticeable if you will than the AN results...
I hope this has helped you understand some of what you are dealing with now,, I know it may not be what you want to hear,, but it is your reality now I imagine,, it is mine anyway.. I am not a Dr so your Dr may have some more incite into what to expect,, it is hard I know,, it took me a long time to resolve my feelings about this ,, but it is my new normal and have realized it... but life is still good,, I just took my first trip to NC for three days on a plane and did well..so there is life after all of this,, hang in there and sit back and don't try to rush it,, you can't anyway,,, I had a test,, I believe it is EMG,, electro stimulation of face muscles,, I call it electric accupuncture,, NOT fun at ALL,, last month and Dr said graft took!! Great news,, so sit back and watch for changes,, don't try to rush it though with too much movement until you have given it some time to heal and regenerate some.. it will happen believe me... if I can answer any other questions, you can PM me if you like,, I don't mean to ramble or be discouraging at all,, in fact just the opposite,, I want you to know it WILL get better and you will be able to eat better,, it is just going to take a few months... Dr said 6 mo for some noticeable changes and it has happened that way,, it sounds like a long time,, but it has gone by quickly,, hard to believe in fact that it has been almost 7 mo since ALL of this has happened... Best of luck to you,, I know you can get through this because AN people are TOUGH and 7/12 folks are EVEN tougher!!!!! My prayers are with you for patience,,,, and healing .... Jane
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Jane you said it well.
After mine was done (9th Feb this year) I lost my voice and was on baby muck for a couple of months, then onto minced/mashed foods. I see the speech therapist tomorrow and I reckon she might say I have to stay on the minced diet for a little while longer. Did you lose your voice at all?
The swelling went down within 10 days and the sore throat could be from having the breathing tube down your throat during surgery or your vagus nerve may have been agitated (controls vocal and swallowing). I also get a sore throat when I've hung clothes on the line or looked up for awhile so I hang my head down and do a few short breaths and try to relax it. I'd say that I'm stretching the scar tissue when this happens.
I scoffed at some answers I got originally that all was going to be ok but I read and take in what everyone says on here now because they're usually right on the mark. It's not an easy thing to go through yet we seem to manage to learn a different way of doing things with each hiccup that we're sent to try us.
If you need answers straight away to allay any sort of fears of what is normal and what isn't please phone your doctor. Then come here. :)
I hope our answers are helping you.
Hugs,
Suu xxoo
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Hi Suu,
No I did not lose my voice and don't remember throat being especially sore, but did have the neck soreness when stretching it.. that is one reason I took my time getting back to driving,, afraid to turn head too far or quickly,, but like you I believe that is the feeling of stretching the incision area. I also did not want to do anything that might hinder the graft before it had time to begin healing..
It does get better is my bottom line here.. it just takes it time.. take care and keep positive attitude towards recovery,, it helps.. like my Dr told me before discharge as he could see how "shell shocked" I was about the facial nerve loss,,, you have to give it time to heal,, but in that time you MUST get yourself out there and return to life,, go out to eat,, when you feel able,, go out with friends,, and just live life to the fullest,, fight any depressing thoughts that may creep in with the knowledge that this too shall pass and will get better.. it is hard and I am not down playing that fact,, but how you are NOW is NOT how you will be in the coming months,, I am proof of that ....Jane
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I almost feel guilty chiming in here because I didn't really have any problems with my 12/7 that I can remember - of course, it was a LONG time ago and my original surgery had so many complications that the 12/7 didn't seem like a big deal! I went back to work straight away, full time, as a 1st grade teacher so know I had no complications speaking. I just remember taking Shreaded Wheat Squares in my lunch because they were bite size, but I look back now and think that would take some chewing (?)!! In my case, that side of my face was completely "dead" (& definitely looked it) - even though the 12/7 didn't really take for me, it did hook that side up to a live nerve so it began to, at least, look a little better so I think it was worth it. I specifically asked the Dr if my face would "wack out" when I chewed because it was controlled by my tongue and he said 'NO!' and it did not!! It took me about 7 months before I saw any movement - I found the spot to put my tongue on the roof of my mouth...
Oh, & the scar, 16 years later...NO ONE can see at all...I guess there are some advantages to getting older!! LOL! But as i often tell my hubs, "SCARS ARE SEXY!!" Goodness knows I have enough! ::)
K ;D
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Just updating everyone, so my sore throat was a combination of an actual sore throat and the swelling from an incision on my neck. It's still a bit sore but getting better. My ear is completly numb still and its quite weird to say the least. Also, apparently my surgeon did other things to my face in addition to the 12/7, there is an incision down by my ear where it seems everyone here had. However, the is another incision towards the bottom of my neck straight across. To the middle of my neck. There is also an incision from the corner of my nose to the end of my mouth. This incision is still swollen but not nearly as bad as it was. My doc said that while we wait for the nerve to recover we could do something to give me movement right after surgery. When I clench my teeth down the corner of my mouth moves up a bit to form a little smile. I can do it now. However, it's hard to see and appreciate with all the swelling still present. The doc said this was short term and the 12/7 would be long term. Other than that my tongue is perfectly normal with no weakness at all and the doc doesn't expect any. I also ate some solid food today. Still difficult to chew but that's only due to swelling also. But I'm hanging in there and it's much easier today than a couple days ago and it's getting better. I'm starting to get the tingly feeling on the side of my face and it feels odd but I like to think its my face getting its tone back slowly. Finally, I was doing some research and apparently in younger patients there is the potential for something called plasticity which is to say my brain could learn to smile again without using my tongue after its done it for awhile. Here's hoping!
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Hi Kenny: I haven't been to this site for quite awhile - I never had the 7/12, but did have the T3, & from what you wrote re: incision from nose to corner of mouth + biting down to give what I call the 'Mona Lisa' smile, sounds like that's what your surgeon did. The T3 does cause alot of swelling. I wish you all the best. Always good thoughts, Nancy ps: Kaybo also had the T3 surgery...
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Is it weird to have both the 12/7 and t3 done at the same time? If that's what my doc did though I don't know.
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I thought it sounded a lot like the T3 too but did they take tendon from your leg to put in your lips to connect??
K ;D
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Nope no incisions on my legs
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I bet it is some variation of - especially if doc said more temporary...
K ;D
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Hey Kay: Dr. Byrne never took a tendon out of my leg for the T3 - he did that with you? He pulled the temporalis tendon on me...
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NO WAY!!! Yes! In fact, the was the worse (regular) part of my recovery...my leg!! He put it in my lip to lengthen & then connect it...
K ;D
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So I'm guessing there is no one set way to due any of these surgeries huh lol
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Yeah Kenny,, that is what you will find out on this forum, , everyone's journey is different,, no SOP for these things,, weird huh..
K and Nancyann,, I am not familiar with the T3,, I had the 7/12,, but is that done when there is not a "long" enough piece of the facial nerve left to connect to the tongue nerve?? Mine has healed well so far,, 7 mos.. but nothing has been said about a T3 needed??? Just wondering.. he said I had enough facial nerve left to connect to tongue nerve end to end.. which was a good thing.......Jane
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Jane-
I actually had the 7/12 a year after my AN surgery and then found out about the T3 (on here from Nancy) about 12 years later! My 7/12 didn't really give me much movement at all. The T3 does NOT involve the nerves so can be done at any time. It was relatively new when we had it done.
K ;D
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Thanks,, so the T3 is done to give more movement of facial muscles?? Sounds like you have to have a muscle from somewhere else inplanted into face?? Then you get more movement of face like eyebrow and cheek?? I was not "promised" total movement of facial muscles with 7/12 so not expecting that ,, just "some" movement and I have gotten that so far ,, as I say it has only been 7 mo and Dr said it would be more like 12-18 mo to see what "total" movement would be... but anything is helpful!! Thanks for info... Jane
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Actually, it was a tendon from my leg - T3 is short for Temporalis Tendon Transfer. And even though it gives you some movement, probably NOT up to eye...
K ;D
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My facial nerve was cut - they did an end to end attachment with what was left of my facial nerve. I was too scared to have the 7/12, or any other surgery on what was left of my nerves immediately post op. The T3 got rid of the 'droop' at the lower 1/2 of my face, & gives me a 'mona lisa' smile when I bite down on the paralyzed side. It does not give me any other movement. I have had many different surgeries on my eye - that is the one area I still have daily issues with...
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Quick question, I'm recovering well, swelling has gone down a lot, no more swallowing problems, no tongue problems, I'm eating solid food now, and the wounds are pretty much all healed up. However, I find it difficult to open my mouth completely. I have to take smaller bites of food because my mouth doesn't seem to open up enough to get bigger food in. I'm obviously not completely healed and am only two weeks removed from surgery. I was just wondering if this would be permanent or is it something that will eventually get better. It's not horrible just annoying at the moment. I think it has to do with the t3 more so than the 12/7. But if anyone has experienced this, info would be appreciated
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So glad to hear you are healing so quickly and well.. I did not have the T3, so can't answer to that healing process,, however, did have the 7/12 and I was unable to open mouth completely for several weeks,, I am about 7 mo out now. I am able to open mouth now but don't chew on the AN affected side yet.. I think that is more due to the feeling that I will not swallow correctly due to tongue not working as it once did. I still prefer not to eat sandwiches,, but am more able to now than at first. At first I could not open mouth wide enough to get the sandwich in unless I cut it into about 1/4s ... I believe yours will improve to where you can open mouth,, but then again,, I did not have that T3 so, it may be inhibiting that movement ,, Iam not really sure what it does or effects... good luck ,, sounds like you are making remarkable improvements this soon!! Good for you! Jane
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I can open my mouth REALLY wide now but can not tell you how long it took....I do think that I had a more limited range of motion after I had the T3 than 12/7...
K ;D
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immediately post op T3, i couldn't even get a straw into my mouth! i had to use a syringe with a tiny catheter at the end. little by little i could open my mouth to use a straw, etc, etc. i can't remember how long it took. boy, i've come a long way! continued healing my friend...