ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Jeanlea on March 19, 2007, 05:25:16 pm
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Hi all,
Today I went to my eye doctor for my periodic check up. My eye was a bit red and he is concerned that I may be getting a corneal ulcer. He was saying that because my eye is not blinking, something from the nerve may not be getting to my eye. I must say I am confused. He is sending me to another eye doctor that deals with the cornea. He put me on antiobiotics and a steroid just in case. He also gave me some Optive drops to try.
After that I went for my MRI. What a day!
Jean
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Hi Jean: I'm sorry to hear this is happening to you; I hope they can put a halt to this.
Thinking about you girlfriend, stay well... Nancy
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Jeanlea: All I can say is "ditto". Been there, done that. In matter of fact, I called my eye Dr. today to see if he would just call in another prescription of the steriod drops, but no, I had to come in and see him. Forget it! I still have some left, and am using the yucky lubricant during the day at school. By the way, although I have no tears in my eye (AN side), my eye does shut and blink, butbecause it is so... dry, it has caused the keratisis( corneal ulcers). I pulled up the Kellogg eye center at U of M website, and my Dr. has done everything they said to do. I bought more gel tonight! Think we should invest in stock! luv2teach
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Luv2teach,
How long do you use the steroid drops for? My doctor didn't say and I didn't think to ask until I was at the pharmacy and they didn't know. I think the new drops he suggested I try made my eye even redder. I'm just going to stick with the Liquigel.
Jean
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Hi Jeanlea:
My Dr. intially started me on the steriod drops for two week, 2x a day.I then went back to see him and he said two more weeks. I had the same problem with the redness and burning. He told me to put eye drops in first, as the steriod was burning because my eye was so dry. I still have a small amnt and have been using it along with trying to remember my drops every hour, and my eyes are clearing up again! The lasck of tears in my AN eye has also dried out my good eye. But things are better. :D
p.s.Jeanlea- I have a small bumb on my head ;)luv2teach
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Hi Jean: wondering how your eye is doing...any further news ?
Luv2teach: I've noticed lately that my 'good' eye has been drier also - when I put lubricant in the AN eye, I also treat the 'good' eye to Systane eye drops -
weird huh? Wonder if anyone else with eye issues is having the dryness ? Could it be 'sympathy dryness' from my good side ?? lol
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Hi NancyAnn, Thanks for asking about my eye. I have discontinued the steroid drops and antibiotic drops. The steroid drops were making my eye very red. I'm using an antibiotic ointment. It's looking better now. Just a little red. I had tried the steroid drops again two days ago and it turned red again. I'll see what the new doctor says on April 10th.
I wonder if anyone has lost their sight in one eye after having an AN? I'm a bit worried now.
How is your eye doing now? Still sore?
Jean
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Hi Jean: Hope the appt. goes well 4/10. I'm worried about the sight thing too. I remember with my 1st eye exam about 3 weeks post op, the optomologist said I had
mild keratosis, he had expected it to be worse. I use lubricant like crazy, especially after you said you're developing a corneal ulcer.
The pain on the right side of my eye is better than it was, I'm getting the shooting pains less frequently. the stitches come out tomorrow;
I hope to be able to use the new goggles I bought for nighttime soon, my eye is having more trouble closing without the weight in, I can't wait to get the
platinum replacement.
Stay well my friend, Nancy
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Hi Jeanlea: I was just wondering... Did you have the tear duct plugs put in ?
I haven't, no docs mentioned them to me. Carol told me she has them & she doesn't need to use drops anymore.
I'm really tired of the lubricants & drops, & my eye still burns regularly.
Think I'll ask my doc about them when I see him 4/29 for my post eye surg. follow up.
Just wondering..... Nancy
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Hi NancyAnn,
My doctor had never mentioned using tear duct plugs either. But I don't know if that would work since I don't produce any tears. Except for when I run. I will ask my new eye doctor about it when I see him on Tuesday.
Jean
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Jean: Let me know what your doc says, I don't produce tears either, other than the croc one's that I have no control over;
but I was thinking that's the point of the plugs - for those of us who don't produce tears ?? Maybe not.......
Talk to you soon, Nancy
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Hi! I have dry spots on my cornea (18 months post-op) which have only just been found and am worried about ulcers too. I have drops to put in at night as the ophthalmologist thought I may be sleeping with that eye open! We discussed Botox for my tearing eye but decided against them because they could cause my lid to droop more than it does now. So, how do you prevent the ulcers? Is there anything we can do? Be grateful for any advice.
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Hi Kimmy: I use Refresh PM at night before bed & in the morning. During the day I started using Celluvisc drops - they're very thick. I think keeping the eye well
lubricated is one way to hopefully keep damage from occuring. As you can see Jeanlea was diagnosed with corneal ulcers. Her doc put her on anitbiotic
drops & steroid drops.
My eye does not close at night - I bought a pair of goggles that have foam in them & they keep the lid closed. The site is
www.eyeeco.com I bought 'The Basic' at $39.00, before I had an eye weight put in I use to cut a piece of saran wrap to fit over the eye & tape the
whole area to make a sort of 'greenhouse' effect - in the morning there would be moisture drops on the inside - it really helped but is a pain to do.
The goggles don't provide moisture unless you soak the removable foam pads in warm water, but just being able to use them to keep the lid closed is a
a blessing.
I don't think there's much else to do except keep that eye lubricated, & see your optomologist. (I'm only 9+ months out with right facial paralysis.)
Take care my friend, Nancy
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Today was my visit to the corena eye specialist doctor. He didn't say that I have corneal ulcers, but my eye is developing some problems from being dry. The way he talked it sounds like most of my problems stem from not being able to feel in my eye. Between that and my eye not blinking correctly it is causing problems. For now he wants me to put in a steroid for at least a month. If that doesn't work I may need to get more of my eyelid sewn shut to protect it.
Right now I'm not feeling very positive about the long-term prognosis. I don't know if my eye will ever blink or have feeling again. If it doesn't it seems like eventually it will break down and my eye will deteriorate until I can no longer see out of it.
I did ask about the tear duct plugs. He didn't seem to positive about them for me since I have no feeling. I think they would be good if you have feeling in your eye.
The doctor seems very concerned that I have no feeling in my eye, but there is nothing that can be done about it. I'm finding myself covering my bad eye, imagining what it would be like with only one eye. Not like I can ever see clearly out of it now.
I'm so frustrated by the whole situation right now.
Jean
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Hi Jean: sorry about the doc visit. Do you have an upper eyelid weight ? (I can't remember)
One thing I try to do (when I can remember it), is squeeze my eyes shut - if I squeeze real hard my eye almost closes,
so I do it routinely (I geuss at least 20x per day, probably more), so my eye gets as much closure as possible. (looks funny to others when I do that,
but who cares?).
Hmmmm, I wonder why the ducts wouldn't help regardless of 'feeling' or not ? I don't see my eye doc till 4/29, (or 4/26 ?), but I'll ask
ask about it when I go.
How much would they 'sew your eye' up? (if this gets done in the future).
Well back to the steroids, I know you didn't like it, but as they say, you gotta do what you gotta do.
Thinking good thoughts for you girlfriend, Nancy
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Hi Nancy,
I do have a gold weight in my eye. I got that before I even left the hospital after my surgery. When I remember I do try to close my eyes. I squeeze them both, but it doesn't look like it. lol
I'll be interested to hear what your doctor says about tear duct plugs.
I'm not sure how much they would sew my eye. I've already had a little of it sewn. I really don't want to do that. It almost seems pointless. It would end up being that way forever, I'm afraid.
I am already putting in the steroids. My eye did get a little redder, but I will give it much longer this time instead of stopping soon.
Thanks for your good thoughts. Hope your eye is feeling better. Have you been able to try your new goggles yet?
Jean
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Hey Jean: That's right !!! You had the weight put in almost immediately (& I waited 1 month, I forgot).
I've been using the goggles, even though my outer eye area is still a little sensitive;
they keep my eyelids closed because the foam is right up against the lid,
but I notice when I take them off to go to the bathrm. at night or in the morning when I get up
that my eye hurts for just a moment - I thought it might be from slight pressure & am wondering if
that can do damage to the cornea - but I think it's foam, not very weighty, & I usually sleep on one side or the other.
I'll also ask the doc about that; but I'm so glad my eyelid is closed I don't want to stop using them, & I sleep better because
everything is pitch black (now I'm thinking the pain might be from the way I'm removing the goggles...hmmmm....
In any case let's both keep good thoughts about these eye issues. I believe every good thought counts !!!!
KEEP USING THE STEROID MEDICINE - THAT'S AN ORDER !!!!!!!!!
PS: I JUST WOKE UP THE NEXT MORNING - & I HAD NO PAIN IN THE EYE WHEN I TOOK OFF THE GOGGLES - THIS A.M. I GRABBED THE GOGGLES AROUND THE EYE AREA, PULLED SLIGHTLY OUT THEN UP & NO PAIN !!!! YIPPEE FOR ME !!!!
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Hello everyone,
This is my first post to an internet forum, so here goes! Surgery was 8 months ago now.
I also suffer from eye redness and reduced feeling in the eye. My way of keeping redness at bay is to use surgical tape ('3M Micropore') to close my eyelid shut and I use it 24 hours a day: at work, at home, when asleep etc. Yes, it is drastic, but I found that it is the only safe way of protecting the eye from serious damage such as corneal ulceration. I also use Lacri-lube gel and Hypromellose (‘Alcon Isopto’) eyedrops throughout the day. I should have a gold weight put in later in the year.
I've noticed that I can almost close the eyelid if I am looking up, but I can't close it at all if I am looking down. Anyone else have this?
One last thing: is ‘saran wrap’ what we in the UK call cling-film- i.e. the stuff that you wrap food in to keep it fresh when in the fridge?
thanks
Tim
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Hi Tim: Isn't that weird ! Yes, If my eyeball is looking down, & I try to close my eyelid, I can't, but if I look up, I can... Wait a minute - I don't know if the eyelid is closing more or, if because my pupil is raised higher, the little bit I CAN close the lid seems like more because the pupil is higher & therefor covered over !!!!!
Okay, next question: sounds like saran wrap & cling film is the same - it's clear, thin & 'hugs' a bowl when you wrap it around it ! - to make the 'greenhouse' effect you cut a piece of cling film to fit around your eye, enough so you can then tape the entire film all around the skin (I did it so the tape was above the eyebrow, on the bridge of the nose..) so no air can get in - then, you'll see in the morning 'dew drops' on the film !! It works great but sooo time consuming.
Good for you taking such care with your eye, I'm also a 'lubricant addict'.
Best wishes Tim, Nancy
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I had a size of a grapefruit tumor which is pretty large. I have had eye problems from a cornea ulcer. I went in and my entire cornea was gone. We tried stichting and finally sewed half my eye shut. I have used steroids and antibiotics for about 2 months. I am sorry we both have to go through it.
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Hi Meagan: Sorry to hear that. How long ago was your initial surgery, & how long after did you find out you had corneal ulcer ? And how long will your eye have to remain partially stitched ? This must be so difficult for you, I can't imagine.......
Take care my friend, Nancy
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Hello:)
My surgery was Jan 3rd 2007 and i was in the hospital until end of february. Everything that could go wrong did...but you gotta roll with the punches. My stitch (sp?) is permanent but reversable so they are thinking about a year for that. I was never told to put in drops and our focus was not on the eye so i went to the er when i lost vision in my eye. We have tried many things and over a month later i have some vision. Thanks for asking...i find what i went through to be interesting to talk about...conversation starter for sure.
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Wow Meagan, you're only 3 1/2 months post op & 2 of those months in the hospital !!! You really sound great too, much better than I was 3 months out - felt like I just wanted to scream over what had happened. Glad your vision is coming back & that the stitches aren't permanent. Can't believe you weren't told to use drops/lubricant - negligence on their part if you ask me. I can't imagine going one day without lubricant let alone months !!! You're one tough cookie !!!!
Always good thoughts Meagan, Nancy
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So, my reconstructive doc wants to wait at least 2 more months before putting in the platinum weight - wants my eyelid totally healed, he doesn't do the plugs, so I called my optomologist, I have an appt. with him on 5/14 - he'll give my eye the once over & I may be able to have the plugs. My eye is burning more & more without a weight.
Also, the foam eye goggles I bought I think are putting too much pressure on my eye at night (even though it's lightweight foam!), so I'll have to stop using them & go back to the plastic wrap - I'm going to try taking the foam piece out of the goggle & line them with the plastic wrap & see if it holds - only because I'm too lazy to 'cut & paste' every night. Well, I'll let everyone (especially Jean) know what happens 5/14, if I can get the plugs or not. Nancy
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Hey Nancy,
Not too much longer until you get your new weight. That's good. I'll be interested to hear what your doctor says about plugs. I had talked with one of my eye doctors (I seem to have a few) about using restasis. He didn't really give an answer. The redness has to be cleared up first. I'm still using the steroids twice a day. It will still get red from time to time. Now I've started using ointment every day. I'm hoping that will help clear it up.
Too bad your goggles aren't working out. Maybe you can attach plastic wrap to a plastic piece that fits over your eye and then someone attach that to an eye-patch with elastic attached to it. Like a pirate.
Jean
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Jean: is Restasis the presciption eye drops that help produce tears ? The Refresh Celluvisc I started using claims to do that - I don't use it exclusively.
Thanks for saying it's not too long a time for the weight, I was thinking '2 months is too long a wait' but you put things in perspective for me !! I like your attitude better, so I'll take it as my own !! I'll ask my doc about Restasis when I see him 5/14 - maybe RX drops will have a better outcome, if he feels I'm not a candidate for the plugs. I put cellophane inside the goggle last night, worked okay, but you're right, I'll tape it on the outside of the goggle as it moved around while I slept, but my eye feels better this a.m. Every morning I use drops to get the red out before putting in lubricant, don't want to scare anyone at work as my eyes get red too !!
Always good thoughts Jean, Nancy
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Hello Nancyann,
I am reading your recent experience with the goggles- my question is: what happens if you sleep with the goggles on, but without the sponge and also without any cellophane? Will the goggle chamber itself act as a chamber to seal in moisture?
take care
Tim
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Tim: I didn't think of doing that & I don't know why - the outer goggle is rubber, so it should promote humidity. I'll try it tonight, Thanks my friend !!
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Nancy, yes Restasis is the prescription that helps your eyes make its own tears. I'll be waiting to hear what your eye doctor says about it.
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Hi Tim: well, my eye doesn't burn or hurt this am, but using the goggles without the cellophane didn't give me the 'greenhouse effect', so I think I'll just continue using the goggles with the cellophane. It was worth the try ! Jean - will let you know about the restasis, my appt. is 5/15. Nancy
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Hello,
I have to correct my earlier post! I wrote earlier that it seemed that I could close the eyelid more when looking up but not when looking down. Nancy you are right: the eyelid does *not* close more when looking up, it's just that the pupil is raised higher which gives me the impression that it's closed! I find that when i try to close the eyelid, it always stays open by about 6mm, and that's the best i can do regardless of whether I look up or down. This means that the 6mm is open even when I'm asleep, which is a bit scary, but I guess we all have similar stories...
Anyway the main reason I am writing is to ask Nancy how things are going without the eye weight, how much longer to wait now? Did you have an allergy to the original gold weight? I hear that sometimes the gold weight is not the correct shape for some patients and that this could also be a cause for the abnormal reaction. The solution is to replace the gold weight with a special platinum weight type that can conform to the curve of your eye better because instead of being solid, it's a chain of platinum links (I've been told). I don't know if gold ones are available like this.
take care
Tim
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Hi Tim: I like hearing what you said about the eyelid accepting the platinum weight shape better. I'm hoping to have it put in around June, July, all depends on my eyelid healing. My doc doesn't know if it was an actual allergy, but the lid stayed red & swollen for 8 months, so it had to come out. Oh, by the way, I don't use the saran wrap on the goggles anymore or the foam. It IS more comfortable without anything in, but I still wake up several times a night as the goggles shift, but it does shield my eye while sleeping.
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Hi Jeanlea: saw my optomologist after work; to put it in a nutshell: he said I'm not a candidate for Restasis or Punctual Plug because the problem is not dry eye, I am making tears; the problem is not closing the eye which is what causes the dryness. My cornea is in great shape - he feels it's because of my constant use of lubricant. Also, when I close my eyes HARD, my right eye closes enough, he said my eyeball goes up & the upper lid comes down enough to cover the cornea.
What he did recommend is a Tarsorrhaphy (when they stitch your eye at the inner & outer aspect so there is a small opening in the center - you can still see but aesthetically doesn't look as good as it is now. Well, the vanity in me won't do it - I told him if the platinum weight doesn't work MAYBE I'd consider it. Well, that's the answer in a nutshell. I'm to continue putting gobs of lubricant in my eye, use goggles or, as he suggested, taping my eye shut at night. I see him again in 2 months.
Meanwhile, he didn't think I had a reaction to the gold weight, but that the weight may have been blocking a duct which caused the swelling/redness - I will let my reconstructive doc know this when I see him the end of June. On a good note he thinks my eye looks much better without any weight, but I still want the platinum.
okay, that's it. Always good thoughts Jean, Nancy
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Nancy, Thanks for sharing the news. When I go to see the cornea specialist in 3 weeks I'll ask him if I have tears. I know I had none a year ago. I had a partial tarsorrhaphy last year. It really doesn't look bad. But of course now, one of my doctors was thinking they may want to do more. I'm thinking NOT! Good to know why the gold weight may not have worked for you. Now they can fix that problem with the platinum weight. Great that it is looking much better!
Jean
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Jean: He didn't mention a 'partial' tarsorrhaphy to me, probably because my eyelid won't move unless I blink real hard, & then only closes a little, but enough to cover the cornea, maybe a partial would be useless in my case. I hope the platinum weight works too - my eyes have always been very sensitive, & with the platinum weight going across the whole upper lid, it may cause more of a problem...well, we'll see. Best wishes to you too - keep putting in the lubricant. I tell ya, last night I was thinking I probably use the lube more like 7-8 times a day !!
Always good thoughts, Nancy
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Hi Nancy
thanks for the update. I think I'm in a very similar position to you- my opthalmologist said the same stuff about how my eyeball looks upwards when trying to close the upper lid, as well as my eye being dry due to incomplete closure rather than not enough tears (although I hear many patients have both).
I am scheduled for tarsorrhaphy (sewing the outer corner only) and a gold weight sometime this summer, so I might get it at the same time as you!. I also have a month's worth of radiotherapy (FSR) scheduled for June, just for good measure! (I'm wondering if they can be done at the same time, but that's another post....)
Good luck Nancy with taping at night if you choose to do it. The surgical tape most people use is not watertight, so using it combined with your goggles should be the perfect combination in my opinion.
Tim
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First posting on this site
Hi all, earlier this year had problems with a very sore red eye, which initially I was told was gluacoma and then diagnosed with a Corneal Ulcer and hospitalised( different Doctors), it was quite bad and my cornea was more than 70% thinner than it should have been. The ucler was quite extensive and although slowly healing I have lost some sight and they don't know whether or not it will return.
I am on steroid drops, anti-bacterial and artificial tear drops. Well this was my left eye, but I have just developed the same in my right eye, it is not so bad because caught early, but am now on all the same drops on this eye also.
They do not seem to why this has occured and for me it has been very painful, a bit distressing because you start to wonder if you will go blind. I am British and don't understand a lot of the discussion about weights on eyes etc on this site
Anyway intersted in anyone's thoughts
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Hi salle47
Are you receiving your treatment in Britain? Me too, welcome to the club.
The gold or platinum weight sewn into the upper eyelid helps the lid to close properly and completely. It's typically needed when the nerves that you use to move the eyelid muscles don't work properly resulting in you not being able to close the eyelid completely, which can be a cause of dry eye. I don't know if you have this.
Did you have a single AN, and which side was it on?
I'm afraid I have not heard before of double sided corneal ulceration. I hope someone else can help.
all the best
Tim
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Hi Tim,
Thank you for responding. I am having my treatment in Britain, however I am an ex-pat living in Spain. It is a bit of a long story, but because my left eye was so bad and i did not feel happy with the treatment I was receiving here, which I was paying for and in fact my eye was getting worse. I returned to the U.K and was admitted to hospital and all this has gone from there.
I now understand about the weights, I don't think the problem is related to my eyes being dry, but at the moment the Doc's don;t seem to know the cause. I am probably missing something, but am not sure what AN stands for!
Things are not much better, I have had this Corneal Ulcer in my left eye for some months, been on steroids etc since the middle of March and although it had not gone, it was settling, so i was told. However my right eye started to be a problen a couple of weeks back and another trip to the U.K confirmed it was starting in my riight eye, so I was put on the same treatment. Now my left eye, my bad eye has decided to flare up and I don.t know what to do. Return to the U.K again, Up my drops, Try the Doc's here again, but then the treatment might be different.
Sorry if this is long and as I can't see very well might have some mistakes.
I will read back at your postings to find out if there are any similarities
Sorry folks just found out what AN is and what this site is for. I actually found the site by typing in Corneal Ulcer forum and obviously did not read it properly.
Take Care Salle
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well i hate that we are going threw this but i'm also glad to see its not only me. this is the second ulcer i have had. today i went to my doctor and she took one look at me and took me first over 10 other patients. she is very good but doesnt speak much english.( being in germany i'm getting used to that).but all i know is this lady gives me the meds to fix the problem,i cant wait to come home to the u.s at least then i will get info on this other than what i read on this site.
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Amaguarda: I'm so sorry you're going thru the problems of corneal ulcers too- seems like that's the only problem I DON'T have. I'll keep good thoughts your cornea heals.
Nancy
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I had to take a break from this site because i was depressed from reading it. I had a cornea ulcer and lost visiion and that is almost better except a patch of scar tissues...not sure if that will go away....they did the partial stitch and did 3/4 of my eye...i cried when they took off the bandage but then my eye won't hold the stitch and pulled open...good think i don't have feeling because ahhh. My main problem is my eye and of course my face. I have been seeing a face retrainer and she gave me exercises for my eye so it doesn't roll back. This whole thing is one depressing think but after 8 months i hoped something would be happening. I switched eye doctors because my doctor played the guessing game...so we will see if this one works better.
Hang in there everyone...it could always be worse...not sure how...but it could. We could be going through chemo which i don't think anyone with an is going through.
Meagan
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Well I haven't been on the boards much because after work if my husbands not keeping me busy doing things I’m just to tired.
Any way I now know where the pirate talk comes from. I have been treated for an eye Ulcer for the last three weeks. Yesterday I was not only told that the ulcer hasn't healed but I now have an abrasion as well. So now I have to put a prescription gel in my eye 4 times a day, which makes for very blurry vision. So that I can still function I have to wear an eye patch.
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Ellen,
Sorry to hear about your eye problelms. I guess you could be a pirate for Halloween! I thought that I had a corneal ulcer but it turns out it's an infiltrate of some kind. My doctor really doesn't know what it is. He thinks it may have something to do with the fact that I have no feeling in my eye. It might be something to do with the nerves. I put ointment in every four hours. The good thing is that whatever it is, it hasn't gotten any worse. Sure hope your eye gets better soon.
Jean