ANA Discussion Forum
Archive => Archives => Topic started by: Zokess on June 30, 2006, 06:01:09 am
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Okay..I was doing good dealing with the facial paralysis that went along with the AN surgery. I thought my surgeon said there wasn't much hope for any sort of recovery from the paralysis because those nerves were so inter-twined with the tumor that he could not save them. My fiance on the other hand thought he said they were just very stretched and thinned. But anyway, after the initial denial, etc...I have accepted my "new" face as is and am learning to deal with it. Then I read an article that someone else had posted a link to in another discussion, written by an eye specialist in the UK who had a AN removed. The article mainly dealt with implications of the eye, but did mention that it could take as long as 18 months for damaged nerves (Like the ones responsible for facial paralysis) to regenerate/heal from the trauma of surgery. So now here I am, almost 9 months post-op thinking that things could get better over the next 9 months. I'm trying not to get to optamistic and set myself up for a dissapointment in 9 months when nothing has recovered.
So on to the informal survey........I know this has kinda-sorta-been covered in another discussion thread, so I apologize if this is s re-hash of that discussion....but of those of us who experienced facial paralysis post-op...how many of us have experienced a recovery to at least some voluntary muscle control, and how long post-op did this recovery occur.
Thanx in advance
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I'm in the same boat ... 11 months post-op .. face is feeling a little better (I think) .. but still no movement at first the Dr's said 6 months , then at the 3 month check up they said 1 year .. but I've read on different sites up to 18 months ..
My eyes have been good. with all the wet weather we are having in the northeast has actually been helpful ! I'm using drops in the morning, and before the drive home from work .. and at bed time I need the thick stuff still . and sometimes like last weekend I went fishing in the rain .. my eyes were as good a new .. I went ALL day without .... (I was soaking wet too by the time I came home).
I have accepted the fact my face will always be a little "off" , but would like to be able to smile again for pictures and such .
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I too am 11 months out. Facial paralysis is what led me to this site. I had some episodes of facial paralysis prior to finding the AN.
The Drs. left some tumor on the facial nerve to preserve it. The nerve was stretched and thin but they got a good reading
after surgery. At 6 mo. I had an EMG which showed electric potential in my lower lip and around my eye. At 11 mo. my lower lip
feels pretty strong. I have some slight movement in the corner of my brow by my nose and slight movement along the side of my
nose. My forehead wrinkles seem to be extending farther into the AN side. The bells palsy site indicates that there can be improvement
18 mos. and some beyond. My recent MRI was stable-yeah! I still have no eye blink and no smile. I think I have more tone. If
I sort of suck in the corner of my mouth on the AN side I sort of look symmetrical. My next appointment will be at 18 mo. Other
than dealing with the dry eye stuff, life is pretty much back to normal. I am hoping that there will be continued facial improvement.
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I am only 3 months out and had excellent nerve conduction after surgery and the paralysis took a couple days to set in. Now it is total and I have no movement anywhere. The eye dryness is the worst symptom. Drs said 3-6 mos to get better, now I know it will be more like 18 mos...if it ever gets better. I wish I had known the truth before the surgery. :-\
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I am 8 years post op and also had facial paralysis. The AN had wrapped itself around the nerve and severly splayed it. The nerve recovered to about 80% of normal within about a year after surgery and has stayed that way until last November. I started noticing the tightness in my face and head (AN side) slowly disapearing. My smile is not as crooked as it had been either. I can actually feel different muscles in my scalp move that I could not before.
My doctors/surgeons were/are baffled and did an MRI, eveything was fine, no tumor. Who knew I'd still be healing this far out....weird and amazing.
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I started with a small, tiny movement at 4 months and have seen improvement on a regular basis since that point. (Now 2 years later). I've had a lot of recovery in the last 6 months, past the 18 month mark. Don't give up hope.
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Hi all,
Good thread. I too have facial paralysis. I am 13mths out from surgery and even though I do not notice any change people that see me infrequently say that I look better (or are they just being nice? lol) I certainly seem to have more sensation developing as time goes on but no motor function on the AN side. Interestingly I emailed a surgeon about cross face grafting of the nerve from one side to the other and he told me that in his experience the facial nerve regenerates for up to FIVE YEARS!!!! My surgeon, who is apparently one of the best in his field (Professor Paul FAGAN is his name) is leaning towards a hypoglossal graft in a few months if there is no motor function evident because he said that is the most effective treatmnet for facial paralysis but I am resisting any further surgery. Good to know that there may be a chance in spontaneous recovery even though it is damn slow!!!!!!!!
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really!! thats his name ;D .. because my full name is "Joe Paul Fagan" too !! LOL ...
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Co-incidence eh? He is apparently the best acoustic neuroma surgeon in the southern hemisphere. Pioneered facial nerve monitoring in Australia etc.
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This might help some. My tumor was very sticky. Although it was 2cm, it took nine hours to get the bits unstuck from the facial nerve. I had excellent conduction post op and for 9 days . But then on day 10 I experienced "late onset paralysis", that is, the eyelid, forehead crease, eyebrow lift, nose wrinlkle, lip curl, pucker, smile curvature, and cheek lift ceased. Numbness issues persisted for the next three weeks. Then slowly the parts started moving. By the end of two months most of the movement was back.   ÂÂ
But, then my tongue started to burn. Actually it too had been numb on its side and I wasn't aware. Today (at 6½ months out), I am still recovering from the tongue numbness and sore spots that come and go on my forehead and lip. Mosts foods taste good but I try to keep my tongue still in there, not wanting it to explore my teeth too much, because that starts up the sore spots again on the tip of it. My doctor predicts that 9 months will see the end of tongue problems too. So far, he's been right. So if you develop "late onset paralysis" hang in there. The only "cure" I used was eye lube, warm compresses, Biotene toothpaste, slow chewing, and very gentle massage with my palms.
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3 years out from surgery at Hopkins. Right side paralysis which the Doc at Hopkins assured me would get much better. As a matter of fact, I remember him saying, "you'll be happy with the results." Needless to say, I'm not. No improvement in 3 years. Surgeons: Drs. Brem and Holliday at JHU.
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I'm nearly 10 months post-op. I have paralysis and numbness on my left side. After 3 months and a handful of days I had some tiny movement. There continues to be more, but it's nowhere near back to normal. At rest my face looks fine. Still talk out of the side of my mouth. I believe that the nerve was not cut, but I woke up from surgery with the paralysis and numbness. At my six month check up my doctor told me my face would not come back. Apparently he expected more progress by that time.
It's good to hear that people continue to make progress long after surgery. I have people that haven't seen me for long stretches of time that tell me my face has improved. That is good to hear. I also continually feel different sensations in my face. Don't really know what it means.
Jean
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Oh Jean, I hate to hear when doctors say at 6 months out that you are recovered as much as you can. I believe my face will never be as it was before surgery but I have seen so much recovery in the last 6 months...18-24 months after surgery.
Keep the faith.....all those different sensations can only be the nerves trying to fire.
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I had some slight facial numbness on my left side (where the AN tumor was located) pre-op, especially around my lips and tongue - and that didn't change (for better or worse) immediately following the tumor removal surgery - and that was a bit of a disappointment. However, I had no facial paralysis post-op, so I was grateful for staying 'even' - and losing the tumor.
Now, 4 + weeks post-surgery, normal feeling is returning to my left cheek area and both my lips and tongue are feeling less numb every day! Time really does help with AN post-op healing.
Jim
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Jim,
Did they remove the whole tumor or did they leave some? Just curious.
DS
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Jim,
Did they remove the whole tumor or did they leave some? Just curious.
DS
According to my neurosergeon, they left 'approximately 5%'. The plan is to begin treating that with fractionalized radiation treatments in August. I have my initial consult with the radiation team on July 13th. I'll have an MRI at that time to determine exactly how much of the AN tumor remains. My hope is...very little!
Jim
EDIT: I had the consultation as scheduled and we've decided to wait until September to begin a Fractionalized Radiation treatment plan: 30 separate radiation treatments given over 30 days. Very conservative but also quite safe and with a 15-year record of success with few complications or negative side effects. My kind of plan! Although there will be an MRI scan taken just prior to the radiation treatment (in September) to 'map' whatever remains of the tumor (not much, we assume) I still have a surgical 'follow-up' MRI scheduled for July 21, which should be informative for both the doctors and myself.
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My surgery was 5-11-06 and had immediate facial paralysis. Dr. said my nerve is intact but was flattened by the tumor. He go all of the tumor. I did not have numbness. I had full sensation on the paralyzed side but no involuntary or voluntary movement. Dr. told me 4-9 months to come back. At my 2 month visit he saw movement along side of my nose with the wrinkle and a crease. Friends and family tell me my face and mouth are not as drawn as they used to be. So hopefully I am experiencing a comeback of my facial nerve. The biggest problem for me is the eye not blinking. The only thing they told me to used is Tears Naturale. I keep hearing about thick stuff on here but have no idea what it is. Good Luck to you.
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The ey drop brands usually have different formulations. Tears are the thinnest and formulas called liquigels are heavier for more severe dry eye and then the heaviest gels for night. You can sometimes get samples from your eye doctor. Walmart and Target have the eye drop sections and you just have to look them over and try different brands. My favorite is Refresh Liquigel in the bottle. I don't like those little individual vials as I poke myself in the eye putting them in. I tried a Genteal brand and it never did a thing for me. Some people like Systane. It gets expensive if try a lot but the eye needs it. You need to use them as soon as the eye feels any bit dry or painful or scratchy.
Have you ever seen the website www.bellspalsy.ws Jacki Diehls a facial therapist from Madison.WI has some good info on that site. I have visited her once and she called the a sore spot a muscle spasm so am not exactly sure if this is your case.
Good luck with your recovery! Cheryl R.
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Hi, Im a newbie to this site but had a AN surgery in St. Vincents July 6 2005.13 months ago. Dr Brackman and Hensilberger were the surgeons.
I lost all facial movement on my right side of face. No eye blink no brow movement droopy mouth. My nerve tested ok after surgery but lost face right after surgery.
I am getting a emg test and they want to do a hyoglossal nerve graft. I have alot of concerns about this nerve graft. Has there been any post about doing this?
Dry eye is the worst. I live in the desert 126 degrees last week. I use bausch and lomb moisture eyes pm the salve, instead of refresh celluvis drops. I put it in in the morning and usually only need it again in the evening.
Thanks for the input.
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Dry eye after AN surgery is extremely annoying, can be painful, and in some cases lead to loss of vision, scarring, and need for corneal transplant (this is pretty rare, however)
First mainstay is artificial tears, the thicker the better (Celluvisc, Genteal Gel, Refresh Liquigel, and especially Refresh Endura (this is the inactive vehicle that Restasis comes in). naturally, the thicker the drop, the blurrier the vision, at least for a while. Lubricating ointment at bedtime is a must (Lacri-Lube, Refresh PM), although you'll be a little gooey when you wake up.Leave the ceiling fan off when your'e sleeping. sometimes ordinary swim goggles help. there are also various brands of moist chambers, which are taped or banded over the eyes to reduce evaporation around the eye's local environment.
If you have significant difficulty closing the eye, strongly consider a gold weight implanted in the upper eyelid. Its' a short procedure, and partially closes the eye, reducing evaporation of your body's natural tears.
Punctum plugs, which are placed in the tear drains in your eyelids to keep your natural tears in your eyes where they belong (analogous to putting the stopped in the drain to keep the water in the bathtub.) very safe and often effective.
Lastly, Restasis, a pricey prescription eyedrop can increase tear production and may help some folks.
Hope this helps.
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Jim,
Sorry I haven't posted sooner. I have kind of been out of commission. I had the 12/7 nerve surgery on 8/3/06. My facial paralysis is permanent. My tumor was emeshed like speghetti through my facial nerve. My dr. had not option but to cut it, he tried to piece it back together, but it did not take.
I hope your radiation treatments in September go well, and you are able to regain your smile and movement in your face. Good Luck!
DS 8)
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Crush, I'm wondering are Brackmann and Hits that want the hyoglossal surgery ? and does "house" do that? or did they reference you to somewhere else?
I'm wondering because I'm much the same as you ... I'm one year out from Brackman and Hits .. no movement >:( but I am getting lots of zaps, pain, and a swollen feeling in my check in the last few weeks... its got me wondering whats going on!! (no I have not talked to them, yet)
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Actually I saw Dr. Brackman last week and they did a emg test at St. Vincents. It showed that my nerve was not doing well.
I have actually been feeling better and many people say I am looking much better. My concern is If I do the Hypoglossal antisomosis
It will end any chance of facial nerve recovery. I am inclined to wait right now. Dr. Hit says he isnt anxious to do the hypo surgery for that reason alone. He felt my face was showing some signs of recovery. Statistics say 1 in 10 million chance of not recovering when the nerve test intact at end of surgery. I belive our bodies want to heal and nerves take a long time.
best wishes to all.
Cush
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I feel the same way, I can wait 5 or even 10 years.. I only wish I knew for sure (one big surgery was enough!) ... they did tell me my facial nerve tested ok at the end of surgery, so I guess I shall wait some more...
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Cush - one more thing! .. Did he say to do anything? .. Electric stim or facial type exerices to keep tone ?
I was last there in Nov 05, starting to think what weekend would work for me for a appointment..