ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Angieshubbie on November 11, 2006, 11:28:06 am
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I had a retro surgery on my AN on 08-21-06. On 09-01-06, I had a blood clot in my brain (sinus vein). I have had some side affects from the surgery and the blood clot. One is the dry eye. Has anyone had it come back? How does it feel?
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Hi - boy did I get the dry eye about 10 to 12 days post op. It felt like I had gravel under my eyelid. I had scratched my cornea to boot. I used the lacrilube at night and put a piece of saran wrap on my eye to keep it moist. I used the thick drops durring the day. My tears quit and my eye didn't shut all the way. By about month 3 it was back to normal.
Good luck, I made at least 3 visits to the eye dr. to make sure everything was healing as it should.
Kathy
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Most AN patients experience the return of a normal tearing eye. It feels awful when it is dry. So, using the right lubricant and keeping it safe from scratches to the cornea are most important while it is dry. In the beginning it seems one is putting the lubricating drops in every hour or so. This will pass for you.
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my tears never came back. i had my translab june 1 2005. scratched up my cornea bad while still in the hospital beacause the nurses wouldnt listen that i couldnt shut my left eye. they actually kept on telling me to shut it and eventually the cornea got scratched and it had to be medicated and taped shut. even then it didnt stay shut.i was told by the eye specialist that my tears would come back in a couple of months and sent home with a truckload of lacrilube. well its been over a year and a half and i still cant cry out my left eye. sometimes it feels as if something is poking it again and again. ive been to the eye doc and she just tells me to keep putting glops and drops in but i have to do it every half hour and if i forget i suffer alot. the lacrilube is so thick it clouds my vision, the artificial tears dont work at all too thin i guess, forget the stuff with celluvisc that just makes it hurt worse. the only stuff i can use during the day if i want to see anything is the refresh liquigel. but the problem is i have to use it so often i think i should own stock in the company. im not sure what i should do at this point. keep waiting for tears to come back, see some more doctors? ive looked up eye problems online and there is no info about this particular problem but it is driving me crazy! anybody have similar experience or any advice? kerri
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oh i forgot to mention my eye does shut the shutting part came back within the first three months
kerri again
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Hi Kerri:
I use the Refresh lubricant several times a day (usually up to 5 or so);
it does make things look fuzzy, harder to read, etc., but it beats the burning & I don't want cornea problems.
Hoping if I ever get movement in that lid I won't need to do it anymore (rarely use Systane eye drops, not strong enough)
Best wishes, Nancy
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Hi Kerri,
I have a problem similar to yours. My eye has not made tears since my surgery which was in Sept. 05. I also have no feeling in that side of my face which means my eye doesn't hurt. The bad part of that is that I don't know when my eye needs more drops. In the summer I was putting in Liquigel every 4 hours or so. Now that it's winter and dry I have to add a drop almost every hour. At night I put in ointment. I've had rare moments when I could see clearly out of that eye, but most of the time it is blurry from the ointment and/or gel. Do you have problems with your eye turning red? I've been getting that more lately. I think it must be because of the cold, dry air.
My eye doctor sent me to get my lower eyelid lifted and the corner of it sewn with a couple of stitches to make the less likely to get dry. Luckily it looks fine now. No one has ever given me any indication if my eye will blink normally again or make tears. I don't think they know. Like you, my eye does close, albeit slowly. I have a gold weight that was put in before I left the hospital after my AN surgery.
I am getting some movement back around my eye. Maybe in another few years it might even blink. To think, I used to take blinking and smiling for granted. :-)
Good luck to you.
Jean
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I have had some tearing in my left eye, however, normal tearing has not returned. When i cry only my right eye cries. I am almost two years post op.
Jeanlea~~ my eye was getting really red last fall, then I developed a dry patch on my cornea that was visible even to me. It was big, about 1/4 the size of my fingernail on my pinkie. My eye dr. told to use lacrilube 4x a day, not drops, that i could loose my eye sight in that eye. I freaked out, and I put lacrilube in 8x a day for about a month and a half, and the dry patch went away. If i don't keep the lacrilube up, then the dry patch comes back after about a week. I am now putting it in 4x a day. It sucks, because things are sometimes blurry, but my eye has never looked this good since surgery, and it actually feels good. I put drops in only in the morning to cleanse my eye, then the the first dose of lacrilube goes on. My dr. said I only need a 1/4 inch strip on the lower lid of my eye on the outside corner, which does minimize some of the blurriness, while lubricating the eye. But, my eye feels better when I put it on the complete lower lid, from corner to corner. I am probably over doing it, but I feel better and my eye is not red and irritated.
Denise
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hi! i had extremely dry eye after my surgery. i had my eye doc put plugs into my tear ducts (the ones that drain the eye)...and life became so much better. in fact, after a year and a half, one fell out and everyone kept asking me if my eye was ok because it was so red. i went back to the eye doc and he put in a new one. got the bill yesterday, it was only $168 or so and covered by ins. i use eye drops only once or twice a YEAR now, instead of ten or twenty times an HOUR!
kristin in montana
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Eye issues are one of the WORSE side effects of AN surgery .. a very close second to headaches ..
I don't think most people understand until in happens to them how life changing event it is .. if I leave the house without drops .. I go into a panic! I now keep extra drops in the car, at work, in my work bag .. basicly everywhere!
the best tip I can give ... keep you eye clean! .. I've gotten very good at picking eye lashes out of my eye .. without good tears you don't flush out hair and dust that can get in your eye .. and for the guys -- don't use a electric shaver .. I used one for a while after the surgery -- and when I stopped -- my eyes got much better!! ..
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Yes - the eye thing is for real
One solution (no pun intended) is to have 2-3 sets on hand
A set might include : the drops, a clean cloth, flushing fluid
the over night stuff, and a small mirror.
Basically one set "at home" one set in the "glove compartment"
and in my case one set in the golf bag !
In addittion sunglasses seem to help as do clear glasses
(anything to keep the wind off)
I use wrap-around safety type for sports - or even household cleaning
- I can assure you bleech spray hurts
esp if you cant blink or water your eye !
These days clear (non focal) type lens glasses look like
normal glasses but cost $10-20 - you can look quite
interlectual if you want
All this combined does help
Good Luck
Tony
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Agree with you 100% Joef,
It always feels like something is in my eye,
sometimes there is (like you said, an eyelash that STICKS ),
sometimes there isn't, but always that feeling....
+ in my case dealing with a swollen upper lid that the docs can't figure out why,
still working on getting a gold sample for allergy testing....
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my tears never came back. i had my translab june 1 2005. scratched up my cornea bad while still in the hospital beacause the nurses wouldnt listen that i couldnt shut my left eye. they actually kept on telling me to shut it and eventually the cornea got scratched and it had to be medicated and taped shut. even then it didnt stay shut.i was told by the eye specialist that my tears would come back in a couple of months and sent home with a truckload of lacrilube. well its been over a year and a half and i still cant cry out my left eye. sometimes it feels as if something is poking it again and again. ive been to the eye doc and she just tells me to keep putting glops and drops in but i have to do it every half hour and if i forget i suffer alot. the lacrilube is so thick it clouds my vision, the artificial tears dont work at all too thin i guess, forget the stuff with celluvisc that just makes it hurt worse. the only stuff i can use during the day if i want to see anything is the refresh liquigel. but the problem is i have to use it so often i think i should own stock in the company. im not sure what i should do at this point. keep waiting for tears to come back, see some more doctors? ive looked up eye problems online and there is no info about this particular problem but it is driving me crazy! anybody have similar experience or any advice? kerri
Hi Kerri, I wish I could help you but all I can do is support you. I was told my eye would tear again in 2 years, that was 15 years ago. That doesn't mean your eye won't tear again. For me it seemed that what they told me I couldn't do I was able to do and what they said I could do never happened. They said I couldn't close my eye or blink after surgery, I did both. They said I couldn't drink from a straw, I did, better than having everything run down my chin when drinking from the glass. Please keep in mind that I didn't have an AN, I had a Facail Nerve Tumor so my situation is a lot different. I can tell you that I fully understand the eye drop, eye ointment situation. The nurses in the hospital had no idea how to take care of me, the drops they put in my eye didn't help at all, the ointment they prescribed for me had preservatives in it which dry out the eye. A few days after I got home my husband took me to the doctor as I could no longer stand the pain. They gave me cortizone drops to alleviate the pain. I saw an eye doctor the following Monday and he gave me preservative free ointment and told me to get rid of the drops. At the time my insurance company paid for the ointment then a couple of years later they realized it was an over the counter item and stopped paying for it. I was using a tube or more a day at $8 a tube. Not long after that I came across Puralube which sold for $3.00 a tube and now costs just under $4. I spend over a $1000.00 a year on ointment, thankfully I'm not buying the other brands or it would cost me $3000. 00 a year or more, I would buy stock in the company then.. I understand the frustration of the blurred vision and find myself going without the ointment every now and then just to see what everyone else sees, then back to the ointment because as you say, if you don't use it regularly you pay later. As for online help or help from the eye doctors, I've seen 3 and I know more then they do about how to take care of my eye. The only time my eye waters is if I choke or workout hard enough to sweat, on a few occasions it has watered for no reason which gives me hope that someday it will. I have a lot more control over my facial movements then I did after the surgery so I figure that there is still a chance that one day if will water or science will find a way to fix it. The only way I know to help you is to say that I have been married for 30 years this month, held the same job for 12 years (got the job 3 years after my surgery), have 2 wonderful grown men that love & support me and a husband that takes good care of me. Take Care, Jill Marie
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Hi everyone:
I must agree with Joef, next to the headaches, the eye pain is really bothering me. It has been two years for me also, and no tears. Both my ENT and eye doctor said"it will be a life long problem". I've tried plugs,restasis, anti-biotics,steriod drops,drops,gels and lubes.Once again, I'm fighting with corneal ulcers. I know I have to use my gels and lubricant more often, but how do you remind yourself when you're busy working?Any hints? I too have bottles of gels, drops and lubes everywhere from the bathroom ,to the car, pockets, work desk...All in all, I'm still happy to be here !!! luv2teach ;D
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Hi luv2teach: For me knowing when to use lubricant is easy: my eye starts BURNING !!!
Some days are worse than others, so on those days I use it more frequently.
Drops don't work as well, not thick enough.
Take care, Nancy
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I think it is all about having a good eye doctor. I feel I really do. I see him every three months and we monitor how my eye is changing with digtal photos and video. My eye has became more normal in size over these last months. I can't believe how much it has changed. I still can't cry but I feel when I do get a really deep cry that i can feel the burning and preparation of crying behind my eyeball but then it doesn't happen. My eye doctor said that after 18 months we would discuss a plan of what to do if my eye still does not blink. I don't know what that means or what will happen but I am just trying to do my best to squeeze my eye shut all the time because he said it simulates blinking. I just bought some motorcycle sunglasses yesterday that wrap around your eyes and they have a molded foam which is like the clear patch except much more stylish. I want to go outside and do fun things. I am taking part in a walk for brain tumors in May and want to look and feel good. I have been trying to resist getting glasses but the eye is just slow healing. I think if you don't have a great relationship with your doctor, find a new one. My eye doctor works very closely with my neurosurgeon. The eye doctor was in to see me the very next morning in the hospital after my surgery. They understand.
Many wishes to each of you,
Lisa
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Luv2teach, are you still in the classroom? In the beginning I wrote the times on the board and had my students remind me to put in the drops. They are ever so helpful. I even have one child trained to put in my ointment if needed. (She was a third grader.) Recess times are also good reminders. Hope all is going well for you.
Jean
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Thanks for the support guys! Oh, my eye burns, I just don't stop and put in drops! Jeanlea- That's a good idea, I have plenty of ADHA kids who can't stop talking or interrupting, it will give them something to interrupt for! I'll try it tomorrow. This is my first year teaching general education, second grade. Teaching in my special ed. room was easier! I had three assistants,les kids and worked in small groups. I have 20 second graders now that are driving me over the edge!!! luv2teach? :o
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Hi guys: Just an FYI: I have been using Refresh PM eye lubricant pretty much exclusively since my eye is so dry all the time &
drops just don't seem to work, UNTIL NOW!!!!: This a.m. I stopped at the store & bought Refresh Celluvisc for
moderate to severe dry eye: it's been over 1 1/2 hours since using it & the burning hasn't started yet !!!!
And it sure beats the 'glazed vision' caused by the lubricant. YIPPEE !!!!!!
I can't remember which thread it was & who suggested the Celluvisc, but THANK YOU !!!!
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Does anyone know how long it takes for restasis to start working. I have been using them with the lacrisert for 6 weeks at least. thx
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I had pretty severe dry eye and started using Restasis about 2 months post surgery as prescribed. I tried it for about 6 weeks and stopped, as it seemed to do nothing for me. Don't quote me exactly, but I think I read that it only works on something like 20% of the people that try it.
13 months out, I still don't tear in that eye, but my eye is much much better and is manageable by just using Refresh Celluvisc eyedrops a few times a day.
Patrick
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Yeah they don't seem to work much. It burns my eyes. I got puctual plugs in both eyes. Works in the good eye but not the right side well the tumor was. I am trying so many types of drops I will check out the celluvisc
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I have been using GenTeal Moderate to Severe...however, I must use drops every 15 mins or so. Is there another brand that may last longer?
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I have been using GenTeal Moderate to Severe...however, I must use drops every 15 mins or so. Is there another brand that may last longer?
I have not found a drop that works. I use Refresh PM round the clock. It blurs the vision in my left eye, but my brain has gotten used to it. Best of all, my cornea is in great shape.
Sara
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WOW- this thread was started in 2006. Well, I'm back to Refresh PM lubricant exclusively. Same as you Sara, I got use to the blurred vision (what else can we do ?)
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...and the thread continues. My eye has been KILLING me this week. I thought that this would go away now that I can close my eye and blink. No such luck. Unfortunately, Refresh Plus and Celluvisc are no longer helpful. As suggested by others, I'll try Refresh PM during the day and just deal with blurry vision.
BTW, I do get a burning feeling like my eye is about to tear, but no tears yet.
Thanks!
Cyndi
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Cyndi, did your eye dryness and pain correspond to turning on your furnace? My ophthalmologist says I must use a humidifier in my office and bedroom during the winter months, and forbids the use of a ceiling fan in the bedroom. (Which BTW I like but my husband hates.)
You will be surprised how quickly you adjust to the blurry vision.
Sara
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Cyndi: Anytime my eye starts burning/hurting, I make an appt. with my ophthalmologist ASAP & every time, sure enough, my cornea is getting dry - so he tells me to increase the lubricant use & REMEMBER TO HOLD THE BLINK ! ! (I have to squeeze when I blink due to the paralysis, even with a 1.6 gram platinum weight). After a few days of this, the burning/pain subside. On my return visit to him (usually within 2 weeks, all is well again).
Always good thoughts, Nancy
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Cyndi -
My eye has been driving me crazy lately, too. I was ready to tell my Dr to just sew it closed it hurt so bad! I went to my corneal specialist yesterday and my eye looks good, albeit a bit dry - no corneal scratches or anything. He put in a punctal plug in the lower tear duct and in just one day it's helped tremendously! I've gone from drops every 15 minutes (with 10 minutes of whimpering in between) to drops every hour to 1.5 hours. So, still a lot, but at least the burn is finally gone!
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Thanks for the suggestions! I used Refresh PM about 5 times last night but STILL had burning and irritation within an hour. I'm calling my neuro ophthalmologist now to see what he suggests. I like this guy but initially I thought he was goofy. When he first found out that I was a swim coach, he said I should wear swim goggles while I work to alleviate dry eye. I laughed but he was serious!
Cyndi
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Swim goggles would serve as inexpensive moisture chamber goggles, which would be a logical next step for you. I've got to run right now but will try to post more info later, or look through the first few pages of posts in the eye issues forum for posts related to moisture chambers.
Sara
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My ophthalmologist says the same thing about swimming goggles - if I didn't use the NITEYE moisture bubble at night, he'd have me wear swimming goggles.
Guess the docs all agree they're great as moisture chambers, which Sara said !
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Hi, I am 6 weeks post op and the worst part for me is the dry eye. It drives me nuts and I usually end up getting a bad headache. I have tried drops, gel, ointments, etc. Somedays they help somedays nothing helps. I have had two temporary plugs put in and they did seem to help. Today I am seeing a new eye doctor and hope to get a permanent plug because I can't take it anymore. :(
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Yipee - my eye feels so much better today. :) I used a homemade moisture chamber (left lens of clear swim goggles) and tucked it in my glasses (sun glasses & reading glasses too) yesterday. A little Celluvisc and my eye is happy once again!
Cyndi
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Hi Lauren - really hope your new ophthalmologist has a better option for you. It's the most frustrating thing to be constantly putting stuff in your eyes. Even though I've never gotten tearing back, my eye did seem to improve several months after surgery. I think that may have been about the time all the drugs from the anesthesia finally worked their way out of my system. Have you tried the Cellivusc gel drops? They're the only drop that works for me - thick and gooey, but at least I can go an hour or so usually.
Debbi
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I just started using Refresh Celluvisc and I am in love! Between those and the punctal plug there's no more burning and I only have to do drops every 2-4 hours! It's like a Halloween miracle!
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Hey everyone. Yes, the eye issues are definitely a challenge. Some days seem to be better than others for me. I also had several venous sinus blood clots. Its not very common-how are you doing? My eye hasn't recovered but I have good days and bad. The moisture barrier and rest are really helpful for me. Sometimes I can;t do anything but use Celluvisc, Refresh PM. tape it shut and put on my concave eye mask.
1. Has anyone tried Allergen/Refresh's prescription drops? Restasis?
2. I would highly recommend my eye mask by Bucky http://www.amazon.com/Bucky-Ultralight-Travel-Eye-Mask/dp/B000FIJ07G
Wishing you comfort with the change in weather,
Karen
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Thanks for the link, Karen. They look like a swimsuit top!
Sara
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Karen, I tried Restasis for about a month and it didn't work for me. I believe I read where it works on something like 20% of the people who try it....maybe it will work for you....it's worth a shot. 15 months after my surgery, I still don't produce tears in the AN side eye...but fortunately just 2 or 3 drops (per day) of Refresh Celluvisc do the trick for me now.
Patrick
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Patrick,
I can't help but wonder why if you don't produce tears that you only have to use drops a couple of time a day. I don't produce tears and use ointment ALL day long, every 15 minutes or so. I'm happy for you but wondering what I'm doing wrong. Jill
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Jill,
I can't really explain it either. I guess there are just different degrees of dry eye. For about 2-3 months after surgery, I was like you in that I had to use drops and ointment a lot during the day. For me, I think this had to do with my blink being very weak from the surgery. Since then, my blinking became stronger and that translated into my eye not hurting and not drying out as often. It's possible that I do produce some tears on the AN side, but I don't notice it. The last time I teared up(few weeks ago), tears still only came out of my non-AN side. My dry eye getting better could also have to do with climate...I live in the Houston, TX area which is normally pretty humid.
I don't think you're necessarily doing anything wrong, it just seems unfortunately to be worse in your case...I'm sorry, I wish I had an easy solution for you....I know how frustrating this was for me to have this issue for a few months, sounds like you have endured with severe dry eye for a long time. Have you tried the Restasis? Also, there are other people on this forum who had success with the punctual plugs....maybe you've been down that road already, but if not maybe it's worth looking in to. Hope you can find some relief/improvement soon.
Patrick
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Hi Jill,
I am 8 weeks post op and received my permanent plug about a week and a half ago. It took about 5 days but finally seems to be helping. I still put in drops, but only every couple of hours instead of every 10 minutes. In the evening my eyes still become very dry and uncomfortable. I see my eye doctor in 2 weeks and she mentioned she may put me on Restasis, so we"ll see how that goes. It seems to be a matter of trial and error. Good luck!
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Thanks Patrick & Ombrerose,
I had a plug put in a few years ago and unfortunately it didn't help at all. As for the Restasis I will have to look into that. Since I have absolutely no watering of the eye I figured there wasn't any chance Restasis would help. My facial nerve was cut and replaced with a nerve from my neck, the doctor told me my eye would eventually water but not blink. He got that backwards. After 17 years of dealing with this I still hope that one day something will change, in the meantime I will look into the Restasis especially if the Insurance will cover it. I use 1 to 2 tubes of ointment a day at $4 to $8 a tube and the Insurance doesn't cover it. They quit making the ointment I was using and what I"m using now isn't as good but it cheaper than the other brands. I'm glad you two don't have to use the drops or ointment as much! Thanks again, Jill
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Can any of you that use the Celluvisc actually see out that eye? I had the delayed paralysis, and am only 2 1/2 weeks post op. Dr. recommended them and I like them, but my eye is to blurry to see anything. I wear glasses too.
thanks
Oops, one other question....since I had the delayed onset of paraylisis and eye stuff do you think I have good chance of getting all back? My appt. isn't for another week with dr., but seems like I have lots of questions. When we left the hospital I was overall feeling great......few days later alll heck broke loose :-)
I've been posting a blog that helps out a lot too. Just put pictures on there and now I will have a place to compare them
THANKS again
Denise Sanford
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Can any of you that use the Celluvisc actually see out that eye? I had the delayed paralysis, and am only 2 1/2 weeks post op. Dr. recommended them and I like them, but my eye is to blurry to see anything. I wear glasses too.
Denise,
Nope, can't really see out of the celluvisc eye. But I've kind of gotten used to it after two months of blurry vision in that eye because of all the drops and lubricant. I have glasses, too. The right (unaffected) eye sees fine with the glasses, the left can't even read the top of the eye chart. :P Unless the dr rinses all the junk out with saline. The one time he did that I saw fine in the left eye, too.
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I just put a couple more pictures on my blog of things I got for eye covers. Check it out and let me know what ya think!! ;)
www.thesanfordadventures.blogspot.com
Denise Sanford
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I had plugs put in and this really helped. It didn't take the first time but did the second time.