ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Nickittynic on November 19, 2009, 08:31:10 pm
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If, following surgery, a facial nerve is intact but severely stretched and stunned, is it guaranteed to one day work again or is it possible for the nerve to be so damaged by the tumor that it just can't?
The reason I ask is, I had a large tumor that was "stuck" on my facial nerve and though my surgeons were awesome and were able to keep the nerve intact, it was "verrrrry stretched" and so since waking up from surgery I've had facial paralysis. I saw the ENT half of my surgery team today and the Dr said if I don't have any signs of recovery by March (6 months post op) he would recommend we start talking reanimation procedures.
It seems like everything I've read on here so far has indicated that if things are intact, it's best to wait and see what happens over the months and years. However I'm wondering if it's possible for the nerve to be so messed up by the tumor that it may as well have been severed?
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Here is a very informative page concerning facial paralysis following surgery: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm
I'm very sorry to say that there are no guarantees for facial nerve recovery. There are indeed cases of recovery after months and years. I think your surgeon is right to wait at least six months; if you see even the slightest movement at that time I would wait longer.
I'm not sure what kind of damage my facial nerve sustained during my microvascular decompression surgery. My neurosurgeon described it as "unhappy." He also said he had a bad feeling about regeneration, but at three months I had a tiny movement at the side of my nose and improvement has been slow and steady since then. I still have a ways to go, but at least the droop is gone.
I hope your nerve recovers as well.
Best,
Sara
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Thanks Sara! I had bookmarked that link awhile ago and then forgot to look at it. Looks like great information!
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I think that you have a good chance of regaining facial function, but this is so unknown. The first 6 months they recommend not doing anything, which people have a hard time with.
You need to let the nerve try to heal itself-
Just look for any type of movement- anything- mouth, lip,cheek. (Like Sara said, it is slow but and steady.)
It is the utmost test of patience. No fun.
If you had your face nerve cut,(I did) it would be starting at ground zero, so you are lucky- there is hope.
After six months, if you need surgical intervention your nerve will respond so much quicker.
I had my facial nerve jump started twice. Once with the brain surgery where they reconnected the face nerve during the surgery, and then the transposition 7/12 surgery.
I just have tough nerves! It is painstakingly slow, but what choice do we have?
Keep the faith!
Maureen
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Following surgery my nerve was intact, but also severely squashed. (That's my medical definition. No one really told me anything other than it was not cut.) At 3 months I had the tiniest bit of movement next to my mouth. I was the only one that could really notice it. At 6 months my doctor told me that my face would not come back. That was devastating. But as time went on, my face has continued to SLOWLY come back. It's been just over four years now and I have a decent smile. I still think my facial paralysis is noticeable, but others do not. As a teacher I get my picture taken annually. I can see the change from year to year. This year my smile was bigger than it was last year. I don't think anyone knows for sure how much each of us will recover. I operate under the philosophy that since the nerve is still intact it will eventually return to normal (if I live long enough lol). Hope is good.
Jean
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Hello,
I'm sorry you are dealing with this issue at such a young age, not that any age should have to deal with such a hurdle. My daughter is going through the same situation as you are. She had her first surgeries (2 stage) to remove 70% of her very large tumor in 2006 when she was 17. This was followed by 28 days of FRS (radiation treatments). But in Jan. 2009 they found that it was growing again. After her 2006 surgeries she did not have any facial paralysis but after this last surgery in June 2009 she ended up with her nerve intact but with a paralysis of #4 on the Brackman scale. Pretty much a total paralysis to look at her. She was told by one of her head and neck surgeons the same- if no movement in 6 months then she should consider the 7/12 jump. Another one of her head and neck surgeons ( he did her vocal cord surgery and monitored her swallowing problems) and 2 of her neurosurgeons told her to wait at least 2 years before she does anything. They all felt that because of her young age she has a good chance of regaining her facial function without intervention. They all said the same thing as far as the nerves needing anywhere from 6-12 months to heal. She is going to has a 3 Tesla MRI done on Dec. 12 and they are hoping to get a glimpse of the nerves and see what they are up to or how they look. I think that is incredible! I will keep you informed. I'm keeping my fingers crossed that they will be able to give her a bit of good news as she is getting quite distressed about her face. There is a web site for another young woman that suffered from a massive AVM (bleed) and she had to have a large portion of her cerebellum removed and had major damage to many cranial nerves. She had the 7/12 jump in April and had her follow-up in October which show signs that the graph is taking. You might want to check it out and follow her progress as I have since this might be a possible surgery in my daughters future. Her story is a remarkable and inspirational. Just Goggle 'Katherine Wolf' and you'll find it.
I'll be praying for your full recovery,
Michelle
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I was in the same situation - my nerve wasn't cut, but my AN was stuck to it and it was stretched to it's limits. My surgical report actually says it was "frayed".
At 6 months, I had a tiny, tiny bit of movement, but most of that was synkinesis, so it wasn't useful movement at all. My doctor recommended trying PT and then re-evaluating at 1 year. I still didn't get much more, but I decided to give it 18 months before trying the 7/12. At 18 months I had the 7/12 and have had good results. I just passed my one year anniversary of that procedure and while my face is far from perfect (hey, wait, it wasn't perfect before my AN! :D), it's much better than it was and I'm still seeing some improvement. I couldn't drink without a straw before and now I can, my eye is trying to blink but just hasn't made it all the way yet and at rest my face looks symmetrical.
I know it's frustrating to try and wait for the nerve to get going again, but I think it's a good idea to give it a chance to see what it will do on it's own before messing with it too much. Jean has proven that patience pays off - she looks great!
Good luck to you!
Lori
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Nicky~
I think that I wouldn't do anything at 6 months. Jean is the perfect example of the nerves coming back. IMO, if you have ANY movement (no matter how small) in that 1st year, you should wait. Kind of like Lori said - you have to evaluate it then as to how "good" it is. I never had ANY movement - ZILCH - so I had a 7/12 after a year. It really didn't take - except that it hooked that side back up to a "hot" nerve again. I then had the T3 in March of 2006 and have been very pleased with the results - especially since I thought that I would be like I had been for 12 years - FOREVER! ;D
Keep the faith!
K ;D
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Hi there,
It's so great to see all the posts about the facial paralysis...I dont even know of this 7/12 !
Anyway during my surgery the facial nerve was 'pulled over to one side' (not sure of correct term) and my head and neck surgeon said that the nerve kind of goes into shock. My eye didn't shut for the first few days but it does now. Apparently the 'wiring' can get a bit cross connected and so when I try to give a big smile, my right eye closes a bit. The forehead doesn't move but I got a very very slow movement back into my cheek. When I smile its lopsided and you can't see the teeth on the right side. I was given a hand held electro nerve stimulator to use for the first few months after surgery and was told that any recovery would be very very slow. At my 1 year check up the surgeon said that it can still keep improving slowly but I realise that in my case, now 2 years on that its probably not going to get much better. At rest my face looks normal enough but speaking, smiling and laughing makes me self conscious. If I had a chance of some type of 're boot' to the nerves I would probably take it but not until at least 1-2 years down the line. Who knew that facial nerves could be such little buggers !! But hey, I'm still alive and am grateful for that first and foremost.
regards, Ali
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Thanks all, this is great info! I'm glad to hear the opinion to wait because honestly I don't want to have more surgery anytime soon. Just need to make sure I'm armed for my Dr's visit in March in case there isn't any movement then and they start pushing surgery.
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I went to thre symposium session in 2007 on the long term surgical facial issues and that dr was for the wait 18 mos before do anything. I think it is like all the drs with AN issues and other health issues. They all have their own opinion. very hard to know what to do sometimes. Cheryl R
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I am in a very similar situation. The phrase was that they "stretched the heck outa the facial nerve". So I woke with complete facial paralysis and am now at a grade 3 on the Brackman scale. I was told to not do anything for a year. If you are at Hopkins already I would recommend going for P.T there as well. I go for therapy with Jen Millar and she is AWESOME. The PT will help to combat developing synkinesis :(
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Hi Nickittynic-
Just wanted to add my two-cents worth to this. My facial nerve was also "stretched" during surgery, but tested fine during/after. Never the less, I still had grade VI paraplysis after surgery. Got a tiny bit of movement in my cheek at about 3 months and some noticeable mid-face movement at 6 or 7 months. I am still not 100% and probably never will be, but I have a pretty good smile and I can close my eye (still no tears, though - rats!). I also have some synkinesis and wonder if I had been more diligent with my facial exercises, if I might have avoided this? I also have the all-powerful ability to freak people out because if I don't think about it, that eye doesn't blink in conjunction with the "good" eye - so I can out stare just about anyone! It's a useful talent... ;D
Have you started any sort of facial retraining? It is a tedious process, but one that is worth it. And for what it is worth, I'd wait awhile on surgery. I got a majority of movement after the six-month mark, so would have hated to have another surgery at that point.
Good luck!
Debbi
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I'm another one where it was so stuck to the facial nerve that the surgeons actually saw the facial nerve before the tumor when they went in, like it was on the backside of the nerve. The nerve's still intact, but didn't react to to stimulation at the end of the surgery and I woke up w/ grade IV. At 6 mos. I got some movement and now at 10 months even more, though also some synkenesis. Still no tears - I'm so sick of the drops!
Anyways, I'm waiting to get referred to a facial physiotherapist. I moved to a new city after the operation and have had a heck of a time getting a referral to a facial therapist. It's supposed to be covered by provincial health care here, but they are being difficult about it. My next appt where I'm trying to get a referral is on my bday, so I'm hoping they take pity on me LOL.
Definitely wait, I literally had NO movement at all, like nothing... I was getting discouraged but then it just all started changing :D 6 months seems like forever, but I'm with you - no more surgeries anytime soon!
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Hi all,
It's been a while since I posted, but thought I'd chime in too. I too had no movement and my surgeon(also from Hopkins) told me he wouldn't entertain the idea of another surgery until at least 18 months post op. I too had some improvent at 6 months and another jump at 12 months. He told me it could take 3-5 years to see the end result. He also told me age was in my favor and those with "younger nerves" tend to retrain their faces faster. Hang in there.
Hope
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One of the many hard things about AN is the waiting...always having to wait...decide...wonder...at least that's how it feels to me.
So I'm sending you some of my patience...I've managed to cultivate quite a bit of it since being diagnosed with this AN, and have found that it does indeed help to wait..both in matters of the mind, heart, and the body. Our bodies are amazing; reading some of the posts here remiind me of that each time. Lots of good advice about similar experiences, sites to visit, articles to read while you are (of course) :) ... waiting !!!!
I know this post doesnt really answer anything you were asking about, but just know that lots of us out here are pulling for you and feel for you, and feel with you (as much as humanly possible!!)
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dont give up am still seeing movement after 3 years
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Younger nerves tend to regroup better? Interesting..im 29....what constitutes young nerveS?
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Darren,
That sounds young to me! Maybe your nerves could lie about their age and say they're even younger! ;)
Lori
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Lori- LOL. I think my nerves just turned 21...that should get them to jump start!
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I spoke to another patient of my surgeon who is 38 and was told his "young nerves" would help in his facial nerve recovery.
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I met with my Doctors yesterday and asked about the "young nerves" and they confirmed that there is literature out there that would suggest truth to it- One surgeon pointed out that if a 24 yr old and a 72 yr old were to get into the same auto accident naturally the 24 yr old would recover better overal.
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Aha! But who determines what 'young' is????? :D
I of course am just a tender girl of 44.
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I was 39 at the time of my surgery and my surgeon referred to me as "younger" (at least when it came to my facial nerve status). :)