ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: CROOKEDSMILE on July 10, 2008, 02:19:00 pm
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I'VE BEEN TOLD 12 MONTHS. THEN I'VE HEARD 18 MONTHS, THEN 2 YEARS, THEN 5 YEARS. THEN 10 YEARS. OKAY...........WHAT HAVE YOUR DOCS TOLD YOU?
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my docs have told me that if a facial nerve does not get cured for 18 months, it will never get after that.
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I think it depends on the patient. I had a great nerve monitoring response right before they closed in surgery, and decent facial movement directly after surgery. After that I developed palsy, but not a severe droop and no numbness. I was told 3-6 months for facial recovery. My neurosurgeon says that he tells some people 12-18 months, so I really do think it depends on a lot of variables. I DO understand your frustration...I've only had this a month, and the eye things sucks. I think I could deal with the rest...
Hope you get some (good) answers,
Tammy
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i am 18 months and stuff is slowing coming back so i am not giving up hope...doctors say around 18 months but my surgery was very complicated and i AM NOT GIVING UP HOPE. lets be honest, hope is all we have sometimes....
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Angie
I don't know what to say. At three months I got some movement. The a short time later I developed synkinesis. The prognosis to return to about normal is 2 years -- with physical therapy. Have you talked with your surgeon? Are they the ones that are giving you the timelines?
David
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Unfortunately, your doctors - or any doctor - can only tell you what to expect based on their past experiences with other patients. And as we've all heard before - everyone is different. They may be able to give you an average time that most people get better, but that average can't apply to everyone. Some people will get better right away, and some not for a longer time than expected.
Your nerve is the only one who knows the answer to "how long will this take?" and I know my facial nerve hasn't told me what it's plans are for recovering, so I'm guessing yours isn't giving out that information either.
I'm coming up on 18 months and am still at a House-Brackmann scale of 5. I have very little movement and what movement I do have is mostly synkinesis, so I will probably be looking at doing the 7-12 nerve jump sometime this fall. It is frustrating and I'd love to be able to smile at everyone I meet (well, almost everyone ;)), but it's just not in the cards for me right now. I've learned during the last almost 18 months that it doesn't matter how impatient I get for things to get back to normal, it won't make it happen any faster. All you can do is keep working at the PT exercises and hope for the best - and get through one day at a time.
Lori :-\ that's my crooked smile
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Lori,
Couldn't have said it any better....what is the 7-12 nerve jump thing....since we have the same time line it is nice to see someone else feeling our pain....i know others had movement quickly but my tumor was a monster so it is a bit slow.....imagine if we could ask our nerves, that would be awesome.... :)
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After waking up with full facial nerve function, I developed a 6/6 palsy within 24 hours. At first, everyone told me to give it a "few weeks to months". My PT and ophthalmologist have stated recently that it could take "two years or longer." Not quite the time frame I had in mind, but I did notice a very slight amount of movement yesterday. (And so did the other 50 people that I made look to confirm what I thought I saw ;D). I am not quite 4 months post op.
I agree with Lori that the doctors only give you a rough estimate based on their experience with their patients. I compare it to the estimate they give you as to how long your surgery may take. They may be right on the money, or hours away, and don't really know until it happens.
Tammy...I also could deal with the whole thing a lot better without the eye issues.
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Lori~
I always thougt that smiley was a crooked one too! ::)
K
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I agree that the doctors can only guess as to what may happen with one particular person's face. I was told that my facial nerve was intact after surgery, but I work up with total paralysis. It's been nearly 3 years now and I have regained some movement. I would say I'm between a 2 and 3 on the Brackman scale. I can make both a open and closed mouth smile, just not as big as before. My eye continues to not blink or tear although it can close on its own (with the help of a weight and lower eyelid lift). I have adapted to it and it doesn't stop me from doing anything. I'm very active doing a lot of running and biking. My theory is that if the nerve is still working it should come back but it's on its own time frame.
Jean
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It sounds like all of us with pirate grins and non blinking eyes have the same questions, and that no one really has the answers. I came to realize at some point during the last few months that this is just going to take as long as it takes. I don't have to like it, but I do have to deal with it. I am less self conscious about going out in public now than I was initially, but the eye care continues to be a pain in the ***!
I am sorry that we all have to be going through this, but I am glad that we are in such good and supportive company. I know that this would be much harder without all of you.
Debbi
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Megan,
The 7-12 is when they take a part of your hypoglossal nerve (that goes to the tongue) and splice it into your facial nerve - kinda like jumper cables. I will initally lose the movement I have, but my doctor is pretty confident that worst case scenario is that he can get me back to a 3 on the scale, which is better than a 5! They say you usually see results within a year of the nerve jump. But, there again, is the average time - could be less, could be more.
My nerve tested fine at the time of surgery, so who knows why it's not doing what I want it to do now - I guess it's still a little ticked off at being messed with. :D So, right now, the plan is to have the 7-12, with both my doctor and me agreeing that I may chicken out at the last minute. I don't think I will though - usually once I decide on something, it's pretty much set.
Debbi is right, the self-consciousness thing does seem to get better. I'm sure everyone has something about themselves they are embarrassed about or not quite happy with - unfortunately it's hard to hide your face like you can some other problems. :-\ If only every day was Halloween! :D
Lori
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My surgeon told me if I didn't see improvement by 6 weeks post-op I would see it for 5-6 months. I have seen improvement, but not as quickly as I 'd like it to be. He also told me if there was no resolution by 12 months he would do a nerve conduction test ( not sure how this is done on the face) to see if the nerve was still functioning and then consider further treatment. I was also told the nerve was not "damaged" during the surgery but the tumor was sitting on the nerve. The eye thing is quite annoying, but it's nice to know we're not alone. Hang in there.
Hope
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Crookedsmile,
Lori is SO bang on.
I have heard different opinions from different surgeons and physicians. The spectrum I have been told has been 3 months to 3 years. :-\
The surgeons seem to give a shorter time frame than the physiotherapists do. :-\
Some days I do not need my eye weight and other days I do. Some days my face is so tight and painful and some days it is not. Just when I think my recovery is going forward my face goes backward :-[ . “Nerve� damage repair is very different from “muscle� damage repair and healing.
One thing I notice is the days I get a good aerobic exercise in my facial function is at the highest. I wonder if getting the blood circulating has anything to do with this.
I think the key is to keep up with facial therapy- even if the progress is at a snail's pace.
Keep taking the vitamin B12
Here is a list of foods containing B12
http://www.nutritiondata.com/foods-000116000000000000000.html
Snails are on the list too. LOL ;) :D ;D
Whether these make a difference I really do not know. :-\
It is a SLOW process…
Daisy Head Mazy
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One more comment - I asked my neuro about the B-12 and he said that there had been some very interesting studies done about it recently, as it relates to nerve regrowth. He said that, as far as he knew, the studies weren't completely conclusive, but he felt that it would be good to take the B-12. I was very encouraged by this - yet another bit of wisdom I've gained from this forum.
BTW, yesterday I spent 1 1/2 hours at the salon getting my wretched, drug damaged hair done. It was very interesting to see how my face changed as I got more tired. The change was quite noticable and the droop was much worse by the time I left. Academically, this was fascinating - as the person it was happening to, it was unnerving and a little scary. I always know when I am getting tired because my speech becomes more difficult, but this is the first time I've actually watched the change in my face occur.
So glad to have all you guys to talk to about this stuff - who else would really understand??
Debbi, with my early morning face
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Debbi,
How does the "DO" look? Nothing like getting your hair done to make a girl feel good!
Anne Marie
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At the time of my original surgery (in 1989), I was told 12 months; I waited exactly that long, then got the 7-12 nerve anastamosis (or graft), which Lori has described so well. Six months after that, my face started to regain its facial tone and symmetry at rest, and I did facial reanimation training with Jackie Diehls and Dr Richard Balliet, which helped tremendously with the synkinesis.
The 7-12 graft was the best decision I ever made, and it was SUCH an easy surgery, especially compared to AN surgery (which, in my book, rates a big "Oy!")... :)
I'm so glad to see that therapy/exercises to promote facial reanimation is a mainstream part of AN treatment at this point (which it definitely wasn't 20 years ago!)
Waiting for facial function to return (and learning to have a public persona which accommodates the many awkward moments that come with palsy) rates pretty darn high on the character-building scale, I'd say!
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Hi everyone i am new here, i had my op in scotland 19 months ago, i am also a member of the UK AN, my face has just started to show an improvment 18 months post op i had grade 6 palasy now i would say is about 2, i have a gold weight in my eye which is now beginning too look very heavy, there are people on the uk site who still see improvements in there face after 3 years so there is hope yet. HI TO JEAN AM ON HERE AT LAST AND ITS A GREAT SITE.
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I have had the 7-12 procedure on Oct. 31 2006. It has helped greatly with tone but not much with movement. I went to see my surgeon a few months ago and he was happy that when I touched my tongue to the roof of my mouth and he could see some movement by my lower eye and corner of mouth. I've been told the 18-24 month thing as well. I am SLOWLY improving but I'm afraid of hitting that wall once the 24 month point arrives. Which is quite soon (Like a month). Its hard not to be discouraged, esp when you're a single college student facing the public almost constantly.
Chris
:-\ <<<<<I still have one of these
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Its hard not to be discouraged, esp when you're a single college student facing the public almost constantly.
Chris,
I am speaking as an ole HS teacher and someone who once went to college… and yup even once dated guys (gasp! :o ) Many of my girlfriends who got deeply involved with a guy just because he was quote “good looking� ended up with disastrous relationships – most likely because their attraction to the guy was so superficial to start with. Two girls that I went to college with, who were always so proud and bragged of their boyfriends “good looks� etc and married their “Mr. Good Looks� are now in their forties- divorced. :-\
My girlfriends from college (ok when dinosaurs roamed the earth)- who just fell in love with a guy because he was so amazing, of up-standing character, gentle , sensitive and for who he is in “the inside�…and actually married the guy they loved for his “Character� are… (guess what?)... STILL married. :)
Hang in there Chris- this is going to make you ever so beautiful and strong in character as a college student – and graduate. Focus on your studies, start building your career – the rest will fall into place when the time is right. When my college dating finally ended (in marriage ;) ) -it is because I picked the one who was the smartest, had upstanding character, gentle sensitive and caring. On “his� perspective he really was not too interested in my appearances - but more my brain. (Thus I was careful to pick a reputable neurosurgeon last summer ;) )
You know if my husband had Bell Palsy when I first met him it would not have made any difference- I was blown away by his brilliance and kindness.
One thing that this ole Bell Palsy experience has given me is to identify who in my life is SO superficial and who is sincere. It has been interesting for my teenage daughter to observe too …and see how her own peers respond to her Mom’s appearances. As she approaches high school, as a freshman, I am confident she will choose her friends not on appearances but on their character.
Study hard... change the world for the better... and some dear sweet gal will fall in love with you for it...
Keep moving forward
DHM
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Really good advice Daisy. Written like a teacher and more importantly like a mom. Even as we age we loose our so called looks, its what's on the inside that counts. Character, brains and a loving heart.
Take care Chris, some of old gals here do know a thing or two!
Anne Marie
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Chris~
I agree with DHM 1oo%, but I know that it is hard being young & believing that when the world you live in 24/7 is constantly telling you otherwise every whinch way you turn. I was young too - only 25, but I had been married for a year so I didn't have to deal with the thoughts & feelings you do. I have moved, though, and that was tough to go "start over." Most of my friends (the TRUE ones) are convinced that my face is always getting better - I know that it is that they are just used to it and it has become part of me AND NO BIG DEAL TO THEM! Hang in there - just like DHM said, the TRUE, non-superficial friends won't care - trust me, I have been like this for 12.5 years!!
K ;)
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thank you all for your reply. :)
I occasionally get discouraged, but I have a great faith in many things.