ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: linny on September 04, 2007, 07:37:49 pm
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I thought I posted this but guess not. I have been out of hospital for A YEAR NOW, AND MY FACIAL Paralyzes is still bad. I was told 6 months to a yearr but its not looking that way now they are talking botox. :o weird but if it works ok with me. I seem to have a dreadful year with all this. First off I had 2 surgeries to remove a very big tumor on my left side. I am tottaly deaf in left ear my left eye I can hardly see out, and it waters all the time when I eat. which is another ugly thing considering the left side looks froozen. my face is not drooping it looks like Im snarling. tighten up or something. Has anyone had that?? I havent been back to work all year I am a letter carrier with a walking route and my balance is alful and my memory bad. I feel extremly depressed over this whole thing as I know alot of you do to. I just want my face back at least. I pray for all of us. :( newbie....
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Hi Linny,
I am so sorry that you have had a dreadful year. I am only 3 1/2 months out and went back to work 1/2 time last week . I am a 2nd grade teacher and the number of changes I have to make to be able to do my job is huge. I had planned to go back full time after next week but I need more time. My biggest problem is the SSD problem but I have some problems with facial paralysis ...my eye too (doesn't blink, waters a lot so it is hard to focus etc.) but I have seen some improvement. The balance issues are there for me as well... but I can manage in a classroom ...although tiring. I can't imagine doing a walking postal route.... is there any chance they could give you a driving route or some other position in the U.S. mail department where you work? I think it is harder to not be working. It gave me way too much time to think about the issues I was battling. At least at work there are some times that I can focus on other things.
I wish I was there to give you a hug. We are here for you.... and I will be praying for you to have the strength for each day (sometimes hour by hour) and that you will find a Dr. who can help you.
Margaret
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thank you Marg so sweet you are. I could not teach anyone my memory strays and its just not like it used to be. :'(
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Linny,
I am so sorry to hear of all the problems you are having. I am 8 mts pre op today. My face has not moved any till last week and I got a slight pulling from my cheek to my upper lip. I have to look in a mirror and concentrate to achieve a closed mouth smile. Dr. Brackmann had given me a 99% chance of getting movements back and I was about to give up. He told me that facial exercises would not help but I have done them anyway and it's paying off. Now if I could just get my eye to blink!!
Hang in there,
Ellis
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Hi Linny: You DID post re: facial paralysis, & I responded, but for the life of me I can't find your post either !! In any case, I can relate to how you're feeling re: facial paralysis. My nerve was cut, not stretched; nerves that were stretched seem to come back, but it can take upwards of 2 years !! I still have no movement at more than 14 months post op.
I agree with Marg - maybe look into a driving route - even if it would be temporary. Working gives me a sense of normalcy in my life, + it pays the bills. Or maybe working at a desk job in the post office ? See if your supervisor can work with you on this ?
I know a couple of people used the botox for the muscle contractions & it did work like a charm for them. I have the droop, so I'm no help with this problem.
Hang in there Linny - we all have our up & down days, Lord knows. Always good thoughts, Nancy
ps: I just found it: you posted under the facial issues: Coming to terms with your paralysis !!
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Hi Ellis,
That is great news for you. That is a long time to have to wait. I felt the same way you did, thinking I will never get any movement at all because it had been 8 months and NOTHING. I now have a full smile!! So, there is lots of recovery you can get!!!!
Do you have a gold weight?
Patti
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Hi Patti,
Thanks! Now I feel like I might have a chance of recovery. You said you have a full smile, is this a closed mouth or a full smile with teeth? All I can do is a closed mouth smile and then its still not completely straight. Do you have the eye issues. I asked my wife to look at me just now and see if I am closing my eye. She said it was half shut. I don't know if it is the weight in my lid are if its starting to get better too. I can't wait to be able to go to a night high school football game without wearing a patch. During the day I have some sunglasses that have moisture chambers in them so I don't look so weird but at night all I have is the ugly patch if I go out.
Take care,
Ellis
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Hi Linny,
I think I did respond to your post on another thread. I just hate it when someone says how bad of a time they are having. I wish we did not have to go through all this. But there is plenty of hope. I can't believe it , but I'm going on 2 years. The first year was very hard for me. But now, I feel and look much different. Things do get better. Sometimes, it was such an uphill battle, but having this brain tumor just takes so long to recover from..... I always thought that when I started seeing my face improve and I started feeling like a person again that -'this was it'- as far as how far I might recover. I think I am STILL recovering......
I had all the phases from pathetic looks from strangers, to right now where I can walk into a room and have a converstation with someone and I don't think they can tell I had all this happened to me. If you are willing to give it all the time it needs, you might be very surprised....
Hi Ellis,
I am very happy to tell you that a year ago I could barely smile-closed mouth. Now, I smile just like I used to!!!! Ok. maybe not exaclty, but NOBODY
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Hey Ellis,
I have the same problem with my eye. It doesn't close all the way, and so I have to apply eye drops and eye ointment daily. The eye ointment works best for lubrication, but you'll find yourself wirping around your eyes wuite often because the ointment tends to get around that area and the day goes by. I had a platinum weight put into my eyelid and also had the outside corner of my eye sewn shut a little(I didn't want to do the sewing part, but the opthalmologist insisted). It helped, but my eye still doesn't shut all the way. If you haven't tried an ointment yet, the one that I've found to be the most comfortable is Lacri-Lube. You can get it from Wal Mart. The only other thing is that the ointment will make your vision quite blurry in that eye, but I've become very accustomed to dealing with it. The eyedrops would just build up a puddle of liquid in the bottom of my eye, which was more uncomfortable than the ointment. Hang in there and know that we're all in this together!
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Hey Linny,
I'm right there with you on wanting my face back. I used to keep my head high, look peoplle straight in their eye and smile at just about everyone I ever came across, and now that not possible. Its quite frustrating and depressing to say the least. My doctor also told me that I was probably gonna get my hearing back and that my face should come back to normal, but it never did. After a year went by, I pretty much gave up hope. My surgery was over 3 years ago and I'm still struggling with it. I'm fortunate that I don't have any balance problems or pains, but the paralysis and deafness is a lot to handle when raising 3 kids and working full time (my husband is a greawt support too). I went back to work full time a month and half after my surgery. Luckily I work for a small family business and don't really have to deal with too many people on a face to face basis, but I'm still out there. Don't worry, things will get better, it just takes time. I know having to accept the paralysis is really hard, so just hang in there. I hope you're able to go back to work soon and get your mind off it all. Any distraction helps. Have your doctors told you why botox would be a good idea? I don't know too much about botox, but I'm trying to figure out how that helps out situation.
Keep your hopes up and be strong!
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Hi aloha808,
Thanks for the post. My eye does close all the way at night when I sleep. The only time I use eye drops are on days like today. I was off from work today and worked in the yard all day. I wore the clear bubble patch but I still get the irritated due to the heat. My job is inside so I rarely have to use drops but they are always in my pocket in case.
I see that your surgery was 3 yrs ago and you still have no movements. Was your facial nerve cut? I was 8 mts before I got a little movement. It's not much but at least I can see a little progress.
The BAHA has helped out with my SSD (single sided deafness). I forgot to wear it to work the other day and I was lost without it. At lunch I went home and got it.
Hang in there,
Ellis
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Ellis: I am so happy to hear you're beginning to see progress !!!! That makes my day !!! And the fact that your eye closes at night & you don't need lubricant during the day !!!! Way to go !!!! It is a long road my friend.
Always good thoughts, Nancy
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Thanks Nancy,
Sorry it took so long to respond but we were out of town this weekend. Now I can do a closed mouth smile and I am getting the crows feet wrinkles under my bad eye when I smile( I never thought I would be glad to see wrinkles). I still can't wink my eye or move my forehead but I practice doing it everyday. Yes it has been a long road and I can't wait to hear that you have got some movements too!
Ellis
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Ellis,
Great news!
Fred
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Thanks Fred,
It's been a long road but I can see the light at the end of the tunnel now. I'm only about 20% in my recovery but it better than nothing. I feel bad to even mention it because there are so many on here that are waiting, like I was, for some kind of movements and nothing yet. I have never had any patients but the Lord has taught me some through all of this.
Ellis
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Hey Ellis: Don't feel bad about mentioning that FINALLY you're getting movement - I am thrilled that you are getting movement back - it took what, 7-8 months ? more or less? WAY TO GO !!!!!!! Always good thoughts, Nancy
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Hi Ellis,
The crows feet thing is Huge!!! I am almost 2 years out and I just got that! It is such a slow process and I know everyone is different. I had my surg. jan 06 and you are doing great.. I had only a slight movement at your stage..... Now I have a full smille!!!!
It just takes time,
Patti
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Patti,
Thanks! You said that you have a full smile now. Are you able to show your teeth when you smile? All I can do is a closed mouth smile. I can't wait to be able to have a FULL SMILE ;D and show my teeth. Are you able to blink you eye? I practice every day but nothing yet!
Nancy,
I am truly excited and blessed to finally be getting some movements but I remember reading other post when they would get some movements. I was happy for them but then I would get down because it wasn't me. The last thing I would want to do is get any one down but maybe it will give someone hope to know that it can come back .
Hang in there,
Ellis
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I just had to share my good news . Today for the first time I washed my hair without getting soap or water in my eye on the AN side ::). I still can't blink on the AN side but I have been able to (mostly) "close" it when I concentrate - for the last couple months . Today I could finally closed 'tight' enough to keep out the water. I know that my AN family will realize what a exciting 'big deal' it is to me (the people at work I told today said 'oh... that's nice' ). I know facial paralysis gets better at different rates but I was still starting to worry, because I had read that some of you were able to blink again after a couple of weeks.... and tomorrow it will be 4 months since my surgery. We sure do all heal at different rates.
Have a great night,
Margaret
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Hi Margaret: Isn't it funny how these 'little things' make us feel so good ? I tend to hold my hands across my forehead, fingertips meeting in the middle, then lean back & as the water hits the front of my head & run my hands backwards !! The things we get use to doing. Well, great news for you - no more red eye from the shower !!! Continued healing my friend, Nancy
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GREAT NEWS Margaret!
Ellis
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Thanks Nancy and Ellis.
Nancy, I did the 2 hand protect the eye thing too ... my daughter suggested swim goggles but I told her it would make washing my hair harder that way. All the little things we take for granted until we can't do them any more.
Oh, I just got back from my ENT's office and his resident asked me to raise my eyebrows.... of course only one raised . It's just too bad I can't make it look more like the way Mr. Spock did it :D .
The ENT said that the ablility to blink can be one of the last things to come back.... and offered a gold weight if I wanted it...but I have been doing ok for the last 4 months - and I don't want any more surgery.... even a very small one.
Margaret
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Margaret: I can't close my eye totally no matter how hard I squeeze; but my optomologist said I have the Bell's phenomenon (I think that's what it's called - someone correct me if I'm wrong) - that's when you go to close your eye & the eyeball rolls upward so the cornea is protected. I think my eyelid closes about 1/2 way when I squeeze hard & all you see is the white of the eyeball. The doc told me to do this as often as I can as it helps bathe the cornea in my tears since my eye does produce tears but they're useless since I can't blink, they just roll down my face. I can't wait to get the platinum weight. I certainly understand your not wanting any more surgeries, & if you don't need it, why bother? Always good thoughts, Nancy
ps: I thought the same thing about the goggles in the shower; I remember Rita (Chris' mom) saying Chris uses them, but for guys their hair is shorter - wouldn't work for me either !
pss: My neurologist said the same thing re: the eye area is the last area to get movement, if it does at all, especially the eyebrow area..
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Nancy,
I remember when you had the gold weight taken out but I thought you had gotten your new platinum weight put in. When are you scheduled to have the surgery? I could not imagine being without mine. I know you have been having it rough and hope the wait is not to much longer.
Ellis
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Hey Ellis: The new eye surgeon who'll be doing the platinum weight wants to wait until after I have facial reconstruction. I have an appt. with Dr. Byrne at Johns Hopkins Oct. 3rd (I can't wait); after that initial appt. I'll know when the surgery will be. I'm feeling ALOT happier since I'm getting closer to the time to have the face fixed. I've been wearing the NitEye Bubble bandage every night & that really helps with increasing moisture to my eye since it doesn't blink at all unless I squeeze REALLY hard.
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Nancy,
Oct. 3 is not to long off but still a long time patching your eye to sleep each night. My weight closes my eye to sleep at night but what I would love to do is go to a night high school game. I would have to wear the clear patch to sit outside and I'm not up to the stares yet. During the day I can wear the special sunglasses I have but it's a different story at night. So I'm stuck in the house listening to the game on the radio tonight!
Good Luck,
Ellis
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Ellis: I know what you mean - I've actually contemplated wearing the 'bubble' at work !! - the darn vanity stops me (I get the stares as it is with just wearing eyeglasses!).
I'm still pouring the lubricant into my eye every 2-3 hours while awake - my optomologist said that's what's kept my cornea doing so well !
ps: Enjoy the game - hope your team wins !!
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Nancy,
Putting the drops in that often must be a bummer. Talking about the stares, I get enough of those from people trying to figure out what is on the back of my head. Ever now and then someone gets up the nerve to ask me what is that box on the back of your head for. When I tell them it a hearing device they just look puzzled. I had one person ask if it was some kind of new phone. I know how they feel though, I have never seen one either till I got one.
Ellis
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I'm so use to putting in the lubricant it's 2nd nature (just did it a minute ago as a matter of fact). I still don't have the nerve to get a hearing device. I geuss if my good ear starts losing it, I'll look into it, but I'm okay with the SSD so far.
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My ENT today (at Oregon Health Sciences University .. OHSU) had not heard of the TransEar hearing devise.... nor had the hearing aid specialist there... I gave them information and after looking at it the hearing aid person told me it looked like a really good device and the ENT's resident said that he was going to research TransEar on the internet. My husband said that the great thing about my Dr. appointment was that I got to share about the new technology with a teaching hospitals hearing department. Now I just need to find someone in this area that will fit a TransEar.
My ENT was very understanding about my not wanting anymore surgery and when I told him a TransEar has a trial period ( if it doesn't work send it back no cost).... he encouraged me to try it.
I also asked him if he had ever been on this forum... and he said yes. I am glad ! I know of at least one doctor who treats AN patients ...willing to spend a little time 'listening' to us. :)
Nancy, I'm so glad you have an option to help with your face. I never thought I was a vain person but I feel very self concious now.... especially when I am up in front of my students. After teaching for a while my face starts getting overstimulated ( I thing that is what is hapening) from all the talking I am doing and I start to trip over my words...especially the ones that start with an f,p, or b. What am I going to do when I go back full time and have to talk all day ::) . Ahhhhhhh
Margaret
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Margaret: I know what you mean about certain letters being difficult - I have to talk alot at work too, by the end of the day I'm holding up my right cheek so I can speak clearly. I feel like the muscles on the left side get so tired....
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Nancy ,
I thought I was alone in that! I have to talk on the phone alots and I find myself near the end of the day holding up my lip so I can half way be understood-- what ever works!
Ellis
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Marg,
Sounds like you are back in the classroom. Second grade, right? I was teaching third grade right after my surgery and looked quite unusual to put it mildly. The students were helpful when I would say a word incorrectly. It also helped me to make sure that I really enunciated each sound correctly. I got the TransEar last February which helps. One of my students calls it my "robot ear". I also have students coming up to me with a tissue and saying,"Your eye is watering." I explain to them that I have to keep ointment in it or my eye will dry out. And now I am at the point where I can even smile and it looks like a smile finally. Someday I'm going to blink and tear again. :-)
Ellis,
Have you checked into motorcycle or safety glasses? You might be able to find a style that looks decent enough to wear at night to the football games.
Jean
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Jean,
When I got my sunglasses I found a pair that had clear lense on their web page. But when I went back 2 mts later I couldn't find them. All they carried now are sunglasses. I just haven't took the time to look anywhere else. Even if I found some my wife doesn't care anything about going. Since my 2 cheerleader girls have graduated she doesn't want to go. She said that the only reason she went in the first place was to support the girls. All along I thought she liked football!
O WELL!!!! At least I have the radio to hear the team!
Ellis
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Hi Ellis.
Yep, I have a full smile, teeth and all! The eye is another story. Still cannot close it all the way but almost. The eye weight really helps. I am now using restasis, but it takes 3 months to start working. It is supposed to make your eye produce more tears.
Patti
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Patti,
That's great news! I can't wait to show my teeth too! Just to have a straight closed mouth smile right now is wonderful. My eye sounds alots like yours. I can close it half way if I try hard but I can go without drops as long as I'm inside.
Ellis
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Margaret, (and Linny)
Way to go on the eye blinking Marg. Yahoo!
During my first post op doctor visit (while still at Stanford) I showed the ENT folks that I could partially close my palsy eye as I was desperately hanging onto some optimism. They explained that this was just “palsy roll�… thus my optimism balloon deflated.
My eye issues continue (even got infected last week from being in the bubble – known as the “germ incubator’) and I went to the Casey Eye institute (not ENT)… and I finally saw THE OHSU ‘eye guy’ Dr. Ng … and he did NOT want to do the eye eight surgery on me as he feels that the 2 surgeries (one to put in and the other to take out later once palsy resolves … whenever that is) is too much after just having the craniotomy …but ordered for me an external weight. It has double sided tape and adheres to the outside of the eyelid. (Between the nasal strips at night to keep the palsy nostril open, the tape on the eye patch etc my face is an ewe gooey 3m gluey sticky mess). You might want to check this out. I will post on the forum my opinion of this device… once I have tried it out.
I am noting a big relationship in all the posted threads here between EXHAUSTION, STRESS AND SYMPTOMS WORSENING. (I cannot image carrying mail i.e. pressure on the spine and CSF and so much walking to be good for your recovery here - Linny). I am determined to manage the pain with regular Tylenol only as I think the meds were causing other havoc on my GI (well noted on this forum with others) and often hide the symptoms of OUR BODIES SAYING “SLOW DOWN, REST … HAVE A NAP!� I know when I was feeling better, on the pain meds, at the hospital – I did too much (and paid later with CSF leaks)
Last night was the first decent nights’ sleep I have had since surgery. First thing this morning, while I was still laying down, my palsy eye opened and closed properly (beyond the palsy roll closure) … however once up and at it -the function stopped. Obviously after rest – the nerves are connecting and functioning better… Before bed facial palsy (and slurred speech from mouth palsy), for me anyway, is worse and eye ever so irritated...
I think some people are just going back to their work and responsibilities (little kids at home etc) too rigorously after surgery … and using various meds to get through the day. These meds mask the very symptoms that we need to listen too.
MANY OF US HAD HOLES DRILLED IN OUR HEADS – THIS IS A BIG DEAL. REMEMBER It WAS NOT JUST EAR SURGERY – WE ARE TALKING “BRAIN SURGERY� WE HAD. REST REST REST
LINNY I THINK YOU ARE DOING WAY TOO MUCH, PHYSICALLY, can you see if you employer can change your position so that you are not SO physically active … I am a big proponent of physical fitness but not physical “exhaustion�.
Margaret wrote
"Today I could finally closed 'tight' enough to keep out the water. I know that my AN family will realize what a exciting 'big deal' it is to me (the people at work I told today said 'oh... that's nice' )"
This morning I told my neighbor (who is driving my kids to school for me as I am still a drunken sailor here- or is that pirate with a patch ARBY DAR!) that I had some eyelid function this morning and she said 'oh... that's nice' too.
OK AN forumers lets have 3 cheers for MARG and her renewed blinking abilities! (1) Hip Hip Hooray! (2) Hip Hip Hooray! (3) Hip Hip Hooray!
Linny I was told the 6 month thing too… but then told it will vary from patient to patient. (I too look snarled face but because I am wearing a dark eye patch it is less obvious- I just look like a 'drunken' pirate now) I was also told to "rest rest rest� (I think the relax word was in there too)
Cheers,
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