ANA Discussion Forum
Archive => Archives => Topic started by: wadsy on January 02, 2006, 07:27:22 pm
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Hi there all,
Can anyone help? I had AN surgery on 9th May last year, translab approach 4cm AN. My surgeon said that the facial nerve was intact and expected facial function to return by christmas. Well although I have tingling and tighness on my left side I have very little movement. My eyelid kinda closes a little and I have no smile which is the worst thing of all. My girlfriend, who I have known for 12mths finally left me at christmas saying it was too much for her to cope with. I have facial symetery at rest and I think its getting better but can anyone tell me when their face started to change back to normal? I am really depressed over all this and wish Id never had the damn op. The doctors really didnt tell me about all these other complications. >:(
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May of 04 or 05 ? These doctors always sugar coat things, first they told me 6 months, then after my 3 month visit he told me 1 year ... but that in another 4 months I would see a lot of improvement! ..
Now don't get me wrong, I'm a lot better than I was after surgery ... its just to dang slow, but as long as I can say "I'm I better than last month? Yea a little!" then its ok!! My Balance is better now than it was pre-op, but I still have to put goop in my eye.
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Hi n thanks,
My op was May 05. Owing by comments here I can expect a few more months yet but Im worried about my face. Even though I feel improvement over the last few months it is hard when I look at myself in the mirror trying to smile. Hence I don't smile much :(. My balance is outa wack a bit but I cope with that. Going to eye doc on 9th of this month to discuss gold weight. I have resisted any more fiddling my drs but my blurry eye is getting the better of me. Does the gold weight dramtically improves one eyesight? Anyone know?
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I assume its blurry because of the drops? (goop!) .. me too, I'm lucky, my wife drives by my work to get to her's, so she's doing most of the driving (at night). she ows me 10 years worth of driving! ;D
I too , somehow I did not mind them drilling in my head as much as I dont want them touching my eye's!!! The gold weigh or plugs do help .. but I'm getting by with the goop ..
as long as it does not interfer with my fishing in the spring , I'll be ok!!
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I had a similar size AN (4.5 CM) removed two years and 4 months ago. I really struggled the first year. If the 8th nerve is intact it will recover some. I still have to put drops in my left eye when I'm outside in the wind, especially when the temp. is cool. Inside it waters enough to keep up, but any wind from air conditioner, heater, light breeze it ususally starts to dry out.
Faical Nerve IMO is slow to recover and take along time to gain any movement. I have about everything except lift. Luckily I have very little sag on the left side, unless I smile you probably couldn't tell unless you've look really close. My balance is real good, only want to topple over if bending down really low, but, I get off balance real easy especially if on uneven or moving surface.
I am still fighting Migraines and left eye not fully watering yet. IMO NOISE induces them. Most days I cannot stand any noise. TV less than 4 bars, Car radio less than two bars. At that level you can't hear them with the house heating system blower running or going down the road above 40 MPH. I also can't stand any clanking of pots and pans or silverware, usally wear an ear plug in my good ear 80% of the time. One a good note the buzzing in my left ear seems to be getting quieter when I not around High pitched noises. Driving at night sucks! Bright lights seems to induce headaches also.
Hopefully you will recover some and be able to function somewhat normally. IMO it will never be the same. You should be able to fish OK if you make sure you have plenty of fluid to water your eye in case the wind gets up. I wear Motorcycle goggles most of the time when I'm out in windy, dusty, or real cool air when I walk the dog. You might try that. I also had the gold weight. If I had it to do over again I would of just got the stick on's for no longer than I needed it Was able to close my eye about 4 months after operation.
I been reading forums for along time. Some have it alot better and some have it alot worse. I am just glad to be alive, functioning , and able to work and do most things I like to do. It should get better it just takes aLONG time IMO, good luck and hope your recovery is quick. I also think age, how long the AN has been pressing on things, and how things go during the operation determine's how well you recover. I was under for 17 hours and change and had some severe head pain afterwards and was on Morphin for about two days.
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Wadsy: Is you eye blurry because of the drops/lubricant or is it too dry? Having you eye too dry can cause blurriness. Keep experimenting with different drops etc. until you find something that works best for you. I have not had the gold weight put in, my eye got better as time went on and then all the plastic surgeries have help as well with giving my lower lid more tone therefor having the upper coming very close to meeting the lower when I do blink. Somedays I continue to have dry itchy eye but I must say that I am not the most compliant with the drops/lub. routine.
As far as your girlfriend leaving you sorry to hear that, a health crisis is often the test of a relationship and she wasn't up to the challenge, I have heard of this happening to other A.N. patient's as well. Concentrate on healing yourself and one day another woman will come along and will acept you the way you are. My current husband is great and he has stood by me through discovery of the regrown tumor, five years of my high anxiety while I was "monitored" and the surgery to remove the regrowth (as well as other life's troubles).....that's what they mean by "life partner", life isn't all peaches and cream.
Take care, Kathleen
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Hang in there.....
I had my surgery 5/9/05 also, only my facial nerve was cut to remove all the tumor. It was huge. Anyway, I got a platinum weight put in 11/2/05. My eye sight is slowly, slowly, improving, still blurry, but I can distinguish what I am looking at. I have very bad double vision, and will probably end up with glasses, I go to the eye clinic on 1/9/06.
My prognosis for my face to return is up to 18 months, according to my dr. I hope yours comes back sooner. I hate having half a smile and would like that to come back if nothing else does.
I guess what I am trying to say is hang in there it will get better, time is so very slow moving, when you want something badly.
DS
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Wadsy - My doctor was very hesitant about giving me recovery times, as no two surgeries and circumstances are alike. I really appreciated that becauseI might have started to get impatient that I was not progresseing as fast as others. I started to feel tingling around 4 months and then very slight movement at the corner of my mouth. It was a slow process, but I knew I was moving in the right direction.
I know this is hard and I am so sorry what happened with your girlfriend. Please stay patient, things will get better. I am 7 years post op and although I have some issues, Life is good.
Keep in touch
matti
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Hey thanks guys for your words and help. Some days I cope better than others and I suppose I am just venting my frustrations. It (AN removal) is such a life altering thing.This second time around for me btw, I had the first op in 2000 and bounced back in 8 weeks so I guess I expected the same this time around. First time, I found out later, the dr left 10% residual tumour because it was firmly adhered to the brianstem and complications were practically non-existant only SSD. And Kathleen, I think my eye is blurry because it tears so much. I don't put drops in it cause it makes it worse >:( I actually have to use a tisisue during the day to soak up the excessive tears and then my vision is not too bad. Thats why I thought the gold weight may help to distribute a film across the eye as my eyelid doesn't close properly. Anyway, the eye doc will know best ::) Let you all know how it goes. :) Thanks again.
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I had a gold weight put in my eyelid a week after my surgery. They wanted to do it before I left the hospital since I live about 4 hours away. I am able to close my eye, even when I'm laying down. I still can't blink normally though. I have to keep drops in my eyes. I use a gel which causes me to have blurry vision. At night I use the thicker goop. Mine is an antibiotic because I've had so many eye problems. I had an infection, just got over pink eye, and an ulcer on my cornea. Still trying to avoid having my eye sewn partially shut. Currently my eyes are both clear! Yea! After all of that I'm happy to live with the blurriness. Every once in a while I can see almost clear. I think if I can begin to blink and tear again that my vision will come back as good as it was before surgery.
I can certainly understand the frustration that is felt in waiting for the facial nerves to heal. I'm nearly 4 months post-op. I know I've made some progress, but I'm not where I want to be. I like Joe's way of looking at it. If you know that you make some progress month by month it helps some. Some nights I lay in bed thinking of how I felt and what I could do when I first came home from the hospital. That's when I can tell that Ive really made progress.
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Hang in there! I'm 19 months post surgery and the recovery timetable is still changing. Now my doc is saying 2 years for full facial function. At 4 months, I had a twitch and my face began to recover. By one year I looked pretty normal, so I'm told. I have numbness so it doesn't feel right to me.
Be greatful you have tears even if too many. What I wouldn't give to not use the lube!
My eyesight didn't normalize for about 6 months or so. I wear glasses and only had my prescription changed a wee bit. Are you going to an opthamologist who has treated AN patients in the past? Mine had not but my husband's uncle, in another state, has and he has been a great resource person.
The other side of An surgery can get pretty ugly but it does get better with time. Patience is the word I hate the most!!!! :) Hang tough as you adjust to your new normal.
And for what it's worth, the now-ex-girlfriend who can't handle all this, isn't what you need. A strong, supportive person is the important, not those who tear you down. Good luck and stay in touch.
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I say my eye doc just yesterday! I told him a think I have to many tears in the afternoon but by dinner my eye is dry again ... and he explained when you blink a tiny duct sucks the extra tears away .. and since your not blinking and the muscle cant suck .. they can only evaporate! and suggested I use a lighter drops more often to get off the lacri-lube I have been using.. Ahhhh Progress!!!!
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Hi Pembo,
Thats for the reply. I went to the eye doctor today and he wants to put a stitch in the corner of the eye and increase the size of the drainage duct because of the tearing during the day. Scheduled for next couple of weeks. Also rang my AN surgeon who wants to do a follow-up consult since my facial function is slower than what he originally told me. And yes, thanks I've finally realised the now ex-girlfriend just couldn't cut it. Shame cause she helped me through the surgery. Anyway...................I know I'm in a better situation than some. Thanks guys.
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For those who are interested, I am sharing my facial recovery story in the March ANA Notes.
I had surgery 2 years ago and yes, the facial recovery has been the hardest.
Part of my recovery has involved massage and visiting a facial retrainer.
My tumor was 4 cm but the facial nerve was preserved.
I hope you find the article helpful.
:)
Mary
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How can I get the ANA notes?
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I'm 11 months post-op and extremely grateful that I'm almost back to normal. I try not to whine about my facial paralysis, my deafness, my goofy balance, and cognitive difficulties. Some days, my ego can't handle it all and I do get quite depressed. Luckily for my husband & our 2 kids, the funky mood goes away when I see someone coping with seemingly worse disabilities.
I have both upper and lower tear duct plugs. The procedure's painless and I use drops only a few times a day, then have to remember to swipe my eyelid every hour since I can't blink. At night, I wear goop and an eye bubble; It's ugly but it works. The only corneal ulcer I've gotten is when I was too vain to wear the bubble.
My acquaintence at work who had an AN surgery shortly before me wears the stick-on gold weight. He, like me, doesn't want surgery to graft the facial nerve.
Recovery from surgery and all the other complications are so hard on a relationship and the people too. I'm sorry that girlfriend left but it's better that he found out now, rather than losing a wife! Hey, "if you can't stand the heat, then get out of the kitchen!" This is survival of the fittest, that's for sure.
I haven't logged on in a long time. I was comforted to read that so many people say "hang in there" and "be patient". I am anxious because I think my face could move tomorrow, or the next day, or next week, or...
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Hey anab thanks for your comments. I'm at the 9mth post op stage and I appreciate things recover slowly but some days are a pain in the......... Anyway, I agree, better to lose a girlfriend than a wife and AN is a testing time on any realtionship. I admire anyone who pulls their relationships through tough times.
Hey on a different note, I have been taking a calcium/magnesium suppliment for the past two weeks (suggested by a friend as the body apparently needs it to heal properly) and I seem to be getting more 'activity' in my face i.e. jabbing pains and sensation. Only slight eye movement yet, nothing else. Anyone else heard of the suppliments or think just coincidence owing to the time frame?
Thanks,
Wadsy.
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I had not heard of a calcium/magnesium supplement. Nothin' to lose so I'll try it, thanks for the tip!
A nurse friend did tell me to take Vitamin B12 for nerve regeneration and general nerve health. I got sub-lingual (under the tongue) B6 & B12 at 'Trader Joes'; It dissolves really fast and is almost tasteless. A neurologist also confirmed that B complex is good for my situation.
My sister-in-law is an optometrist and she recommended fish oil for overall lubrication, but specifically to keep my eye from getting too dry.
Good luck--
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Hi - I'm 5 months post translab now and luckily my face improved quite quickly. I was what they call here Grade 3 when I left hospital. I got my smile and raised eyebrow back at about three and a half months but now the elastic seems to have snapped back too far and my smile and chewing makes me squint on the AN side. Nothing noticeable at rest but a little odd in general. I notice someone else mentioned this problem and wonder if anyone knows when it stops. By the way does anyone's AN ear itch like crazy? :-\
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kimmy: itchy ear may be due to dried blood in there, have your family doctor syringe it out and see if something comes out (I havd that after one of my plastic's surgeries). Kathleen
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Hi kimmy,
My ear itched like crazy and it felt as though it was 'full' The dr just said leave it as it will go away (and it did) I did find though that to make more room for the surgery they 'reversed' my eardrum so just inside the canal I have a blockage, which the dr said was skin so the canal is full block. Does that make sense to anyone? No hearing that side so doesnt matter I suppose. What the elastic you talk about?? I didnt have that, I dont think.
You're lucky that your face came back so soon. 8 mths out and still waiting.....................................
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anab: Fish oil? In your eye? Doesn't that 1. stink and 2. sting? Kathleen
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My facial weakness developed a week after my surgery. It has now been 12 weeks and everything is back except incomplete blinking and tearing in my AN side eye. I can close my eye though. My doctor put me on Restasis which at first seemed to do nothing but I can see now that my eye is more lubricated and I hardly have to use drops anymore (even without the tearing or blinking). I was told to take Flax seed oil daily. I told the doctor I was already taking fish oil and was told to alternate them, one day Flax seed, next day fish oil. Another AN surgery patient recommended Bilberry with lutein and beta carotene so I am taking those as well. I am not sure what helps what but I have had considerable improvement since I started this routine.
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Greetings to all of you, I haven't been on this site in several months and just reading through the postings reminds me that I'm not in this alone and as so many of you have already explained, we all heal differently. I had a large AN (over 5cm) removed on the right side in November 2005, I lost my right side hearing, balance is okay (I still run and cycle quite a bit) and I have some of the same aggravations as the rest oif you with dry eye and facial paralysis the most persistent. My Dr. gave me very realistic expectations of 12-18 months for paralysis to subside and a nerve graft is still an option (uh, maybe later!). For the most part I feel very fortunate to have only these two sysmptoms remaining.
As far as therapy that works I've found a lot of improvement with the Japanese method of Acupuncture, which uses smaller needles, massage, herbs, and is more subtle than more mainstream methods. My Ophthamologist is very supportive since I was able to close my eyelid after only 4 treatments. My Neurologist isn't as enthusiastic but as he puts it "it can't hurt", yes sir. I had a close friend refer me and after 3 months of regular visits I have random twitching on the right side of my face now. I agree that good nutrition is important and that subliungual vitamin B-12 is beneficial, as is vitamin C and a good B-complex. I will also try the Calcium-Magnesium now that I've been reminded, it's always been promoted as a "nervous system" aid. Thanks for the tip.
I find that being outside in cold weather brings facial numbness quickly and that a good sauna undoes the effect and tightens up the facial muscles ebout as fast so that's my only other recommendation. Yes, I sometimes tear after eating something sour or hot and sometimes my nose runs on that side only, but I've learned to adapt (and carry tissue). I'm optimistic about the long term and appreciate all of your postings. Thanks
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Thank you to all that post updates on their facial paralysis. My surgery in July of 2005 went fine and I feel pretty good except for the face.
I came out of surgery as a 6-which means complete paralysis. It's kind of like a twilight zone episode-your life is saved but
you must give up your smile. I think things are getting better - I can drink from a cup now and can go out to eat with the
family without food running down my face. I guess I wish I had taken a photograph right out of surgery so that I could compare
any changes. Reading that it has taken this long for others too does give one hope.