ANA Discussion Forum
General Category => AN Issues => Topic started by: calimama on June 16, 2008, 06:11:56 pm
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HI ALL,
sorry this is my first chance in a while to update.
in laws arrived first thing friday morning. a blur of motion ever since.
so i am still suffering from horrible double vision (i had no idea about this!). face is still numb and broken, but otherwise i am doing well. eye issues make time here tough.
got my staples out on friday. incision doing well thankfully.
seeing opthamologist tomorrow... hoping she can help in some way.
took m first shower (sitting) on my own today. washed and dried hair. amazing what that can do for a girl!
anyway, feeling good and sleeping better. just hoping my eyes straighten out!!
hanging in there....
trish
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Trish, glad to hear you are doing ok in spite of the recent challeges. I still don't have full range of motion of my face on the AN side and I had pretty bad vision and attention right afterward, too. No worries since they all will pass. Jim said it aptly (haven't had the chance yet to give credit where its due) when he said that its like coming out of a LOOOONG fog. You will get there. Despite my issues with the incision, facial paralysis and all that entails (eating, talking, eye not clossing, etc...) I'm getting better day by day. So, will you. Give it some time. Be patient. Those around ya need patience too. Have faith and stay strong my friend.
Brian
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Good on ya, Trish! Take it easy and get in those baby cuddles you've been missing. I go into hosp tomorrow, with surgery Thursday morning and know that I'll be missing my kids so much, but I know they will be well cared for and I'll be home, in whatever form, soon.
What is up with your eyes? You asked it so well "I had no idea about this" - I've read bits here and there, and some folks mention an eye weight.....I have not had double vision or headaches before surgery, so I am hoping to skip any big eyeproblems. docs told me not to wear my contacts to avoid any further damage and I asked "what damage?" and they said won't know if any until post surgery. like you said....i had no idea.
at this point i just double check my bag and have to let it go.
hang in there, mummy. will check in with you when i'm out, too...... cynthianz
cynthia morris in auckland, nz
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Trish -
it's amazing how wonderful a shower can feel, isn't it ;D
It sounds like you are doing well despite a few issues. Two weeks isn't a lot of time in the scope of things. As Brian said, give it some time and try to be patient - it's not easy, I know.
I wish I had some insight on your double vision. Although I experienced it post op it went away on it's own in 2 or 3 days. I remember asking my neurotologist how long it would last and he told me that he honestly didn't know. I might be one of those things that no one has a concrete answer for, but I think seeing the opthamologist is a very wise decision.
Hang in there,
Jan
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Hi Trush,
I'm glad to hear you are feeling better. The double vision sounds tough, but hopefully taking a shower on your own mad eyou feel better. I have to agree with Jan, it is amazing how much better it can make you feel. Good luck at the opthamologist. I hope he/she can help with your eye problems. Hang in there, I'm sure it will get beter.
Wendy
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Hi, Trish:
Wow...two weeks, already? A shower is really a treat, isn't it? I'm pleased that you're doing pretty well but the double vision thing does happen. Like Jan, I had it for a few days post-op but it resolved by the time my hospital stay ended. I very much hope your's is temporary, which is usually the case. Glad to learn that you're feeling good and sleeping, too. I anticipate your next update will have promising news about your vision.
Thanks for the update - and keep moving forward. :)
Jim
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Trish -
I just finished reading a post from Daisy Head Mazy over here http://anausa.org/forum/index.php?topic=6596.msg66967#msg66967. The information she talks about might be helpful to you.
Jan
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HAng in there Trish. Once I hit 3 weeks post op I really started feelign (semi) normal again. I'm now jsut about 5 weeks post op, back to work and feelign wonderful. You're in my prayers. Hang in there :)
Melissa
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Trish~
How is everything with Cali??
K
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Trish-
Hopefully the opthamologist will be able to help with the eye problems. I am still having to lubricate my eye all day and patch and "goo" it at night. I am able to go longer during the day now between drops, which is very encouraging.
The numb face thing is definitely frustrating - I'm right there with you. Patience is hard, but necessary. I went to a facial therapist several weeks ago to get started on some nerve stimulating exercises. Your surgeon should tell you when it is okay to see a therapist.
Ah, the first shower!!! Total bliss, wasn't it? Amazing how something as simple as a shower can make your whole day seem brighter.
I know you know this, Trish - but be patient with yourself. I'm sending you good thoughts and prayers.
Debbi - smiling at you with my left side!
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hi guys...
thanks for your messages of hope and support and good luck with that surgery in NZ!
opthamologist was really of little help. poop.
i am feeling good despite these eyes of mine... at least it distracts from the crooked smile!
will hang in there as you all suggest... what else can i do!
Cali started walking and is cuter than ever. We are reconnecting after my week away. IN laws from Colombia are a great help.
more soon... thanks guys!
Trish
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Hey Trish
What's the deal with your eye doctor? Mine was the post-op medical shining star amid a stack of duds. Has your doctor done anything to protect your cornea? I had an extended wear clear contact placed in my eye. It did two things -- it protected my cornea from exposure and it held the goop in place. Granted I was still dealing with regularly gooping my eye and the discomfort for three months and the moisture chamber, but I do think the eye docs advice saved me from a lot more agony.
And Cali is walking!!!! That is really fun. But wait till you see the mischief she'll get into now ;).
Hoping for your smooth recovery.
David
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Glad to hear the in laws from Columbia worked out, I remember that was a scheduling issue a while back.
Is the double vision related to any balance issue at all? It could be part of adjusting to that change.
Best to you and Cali,
Steve
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Melissa~
I had been wondering about the in-law situation and hoping that it was going well -- I'm glad they have been a help!!
K
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Hi Trish,
glad to hear you are feeling a bit stronger and that your incision is healing well. Hopefully your other post-surgical issues will improve bit by bit as well. The double vision sounds awful, though! If it doesn't improve soon, I hope you'll press your opthalmologist for help with the issue, or find a new opthalmologist!
I'm actually wondering, though, whether double vision is a neurological issue or a opthalmologic issue. I don't remember experiencing double vision per se (but my memories from my '89 surgery are pretty fuzzy, as far as the hospital stay goes)--but I do remember that my eyes were moving independently of one another the first few days and it was really hard to look at anything,, much less focus. If something similar is going on with you, maybe a neurologist (or your neurosurgeon) would be an appropriate source of advice?
It's great that things worked out with your in-laws, and how exciting that Cali is walking!
Carrie
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Maybe Cali decided to take advantage of the fact that Mommy can't see very clearly right now to start walking! Just imagine all the fun things she will be able to get her little tiny hands on now! She's a smart one! ;D
Hope the eye issues clear up soon. I never had the double vision, but I seemed to have my share of eye discomfort. Luckily, like David, my eye guy was sent directly from heaven. Absolutely the kindest, most compassionate man I've ever met and he did a great job on my eye, which I suppose it the important part. Maybe I can ship him out to you. Or you can come here and I can watch Cali for you - she looks like a good cuddler. Mine don't sit still long enough for a good cuddle these days.
Lori
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I am definitely relating to your eye problems. I am seeing an opthamologist tomorrow and hope to get some temporary eye weights to help. I had double vision for only a day, but have clear vision on the right paired with blurry vision on the left (due to the drops and gels), and it feels rather like double vision. Does it help to tape an eye shut? That's what I'm doing at the moment. My husband just came home with an eye patch so I don't look quite so scary.
Hope you improve soon - take care,
Tam
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Hi Trish! Wishing you well! Prayers are with you, Patience time heals all wounds. Mickey
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Hi again-
Tammy,I have heard/read all sorts of mixed opinions on patching versus taping. I've done both. I llike using the "occlusion" patches that are readily available at drugstores in the eye drop section - they appear to be made for kids, andthey are eye shaped with a non-fibrous pad over the eye - and they look like an eye shaped bandage. I "de-sitcky" them a bit with my finger tips first because otherwise they stick too tightly to my tender eye skin. Does that make sense?
Occasionially, for a change, I tape it, using that wide white cloth-like tape. Again, I desticky it a bit first. My husband bought some cute cartoon sticky things that you can put over the patch for a snazzy look ... ::)
I put a ton of gel in my eye at night and then patch it up - always wake up with my eye feeling great. During the day, I use Refresh Celluvisc and, yes, it makes my vision blurry. Haven't figured out anyway to correct that. However, you do get used to it after awhile.
Whatever you do, don't try driving with your eye patched or taped shut - your peripheral vision will be very impaired!
The opthamologist I saw was of very little help with this - hadn't even heard of the occulusion patches.
I will be very curious to hear more about the removable eye weight. Since I am 7 weeks post and still can close my right eye, I may need to look into that soon. Would love to hear comments...
Debbi - still sporting the pirate look
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Debbi is right - there are a lot of differing opinions on the eye patch/tape issue. My doctors don't suggest it, so I've never done it. Their fear is that if the eye opens with the patch/tape on it, you can do more damage to your cornea that way. My opthomologist didn't suggest it either. But, I guess it all depends on who you ask. The main thing is to avoid scratching the heck out of your eye, so however you can do that, I guess that's what you have to do.
I used an eye bubble for a little while at night, but that got old fast and I hated it, so I just lubed up really well and put a humidifier in my room and that did the trick for me. Then I had the tarsorrhaphy and the tear duct cauterization and was able to lose the humidifier and have actually survived a few nights without gel - only because I fell asleep early and didn't get to put them in first!
Lori
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Hi, Trish:
I'm sorry you're experiencing eye problems and I suspect you may want to find a different ophthalmologist, soon.
You're right...hanging in there is pretty much your only option but if you can do it with a positive spirit and a determination to get through all this it makes the journey a bit easier. I'm glad the visiting in-laws are a help and not a burden. You have enough to deal with right now.
That Calli is walking must be such a joy. My (adult) son has been walking for over a quarter-century now, but my wife and I can still remember his first, tentative steps. Even with your AN-related issues, these are good years Trish. Enjoy them to the fullest. :)
Jim
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I am living proof that I don't EVER want to patch my eye again and I tell EVERYONE who is in that position NOT TO!!! Patching is the reason that I had to have my eye sewn shut - I would patch it like the Dr. told me and then it would pop open behind the patch and the patch scratched it!! Of course, this was back before they had all the fancy smancy patching stuff & it was just white gauze and tape!! The opthamologist was the one telling me to patch and working with me - I think he learned a LOT from me...
K
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Trish
I don't know if this has been mentioned in this thread (I'm having an ADD day), but are you wearing a moisture chamber over your eye? It's annoying but it helps a lot. I'd wore it to sleep for the first four months until I started getting movement in my eye lid. And I wore a black eye patch when I when outside. It was winter and it helped protect from the dry cold wind and the blinding sunlight. I can squeeze my eye closed now, so it's not an issue as much -- although I always wear very dark wrap-around sunglasses.
David
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I have been thru 2 surgeries with facial paralysis and of course dry eye and no blink at first. I have only seen one opthamalogist at 3 weeks past first surgery due to my hospital only gives lt weight tears for day time use. I had a dry eye spell but no corneal erosion. After alot of experimenting with various gels I use Refresh Liquigel. After my 2nd surgery in 2006 that included a facial nerve graft, I got by just using the Refresh Liquigel in the day time. My eye eventully did shut on its own but took some time. I use Lacrilube or Refresh pm gel at night. At first I used saran wrap and put gel around the inside to hold it on my eye. I tried other types of patches at night and then went back to the saran wrap. Once I improved some I just use gel at night and still do except now on both eyes. My surgery 2 mos ago did not do facial paralysis but just some slight left side eye dryness. I rarely even have to use drops in the day on the left and only occ on the right. I was encouraged to do the gold weight after the 2006 surgeries. ( CSF leak 2 weeks later) but declined and said I would if I couldn't get by.
I have never taped my eye shut. I do feel very lucky that I got by as well as I did.
I wish we could take stock in Refresh products! One has to be very vigilant in taking care of the eye.
Cheryl R
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There is a method to the taping, according to my neurologist. If you tape, pull the corner of the eye to the side to that the lid closes that way, and then tape down. This seals it quite tight, and will protect it. I'm trying to go half and half during the day, but find my equilibrium to be better without that blurry eye. So, it is kind of a day-by-day thing for me. I can close the eye, just not together with the other one, and it doesn't quite close all the way. I'm only a week post-op tomorrow, so I guess that will have to be good enough for now. I am extremely interested in the temporary eye weights, though, and see the opthamologist tomorrow morning to ask about them. I think I'd just feel a lot better all round if I could see a bit better.
Tam