Hello all.
A bit of history-I am 43 yrs old. I have Lupus, Fibro, CFS, RCE, Sjogrens, SVT(heart prob) and many other Lupus-associated disorders.
I've been dealing w/RCE for many years now-old eye doc scraped my corneas several times, lasted a while-then back again.
Well last Sept. I finally went and found a new eye doc in the area we now live-he's one of the top eye docs in this Tri-State area-NJ/NY/PA-even listed as such every year in a top doc mag. So I figured he knows his stuff! lol Right away he started me on trying to get this RCE under control. I had punctal plugs put in both lower ducts, but my corneas are so super-sensitive from yrs of erosions, just the plugs touching an area of my corneas caused me intense pain!! All it ever took to get a new erosion was me turning my head/eyes, opening them upon waking, etc...whenever my eyeballs would touch that little fleshy area where the ducts are, it would be very painful and cause more erosions-so now, there are these little plugs-granted small to begin with-but they make that little fleshy area, now a harder surface to my battered corneas. lol So, back I went and he saw right away the mess I was in and put contact bandages in both eyes. OMG instant relief!! lol
Anyways, went back and forth for replacements of the contacts-they have to do it every time because that's how sensitive my corneas are-I can't get near them without pain. So he decided he wanted to to the Anterior Stromal Puncture to try and get the RCE under control more-because the plugs weren't doing much due to the continuing probs w/my corneas. He said before we really see any results from the plugs, we had to get these corneas healed. So, I had the left eye done on Jan 4th. Oh what fun that was healing from!! Just like whenever I had em scraped-ugh!!! So, back and forth I go for checkups each week since-he is very pleased with the results so far-said the cornea is healing nicely-much to his surprise because of my history and all.
I did wind up w/an infection though, in both eyes, even though only the left was done so far. My eyes have been VERY sensitive to light-any light, but sunlight the most! He gave me FML(love that name-fits perfect for me! haha!) drops-steroid drops to use 3xs a day in both eyes. It helped for a time.
Well, last Wed and most recent appt. he took the BCLs out and left them out this time!! I became dependant on them protecting my corneas from the tearduct/plug area and preventing that horrid pain. But he said the contacts are only making my eyes even drier because they were in 24/7. As soon as they came out-I felt that pain with every move of my head/eyes!! He said we have to try it this way...most people don't feel the plugs, but like I had said, he said my corneas are just VERY sensitive to the pain from years of erosions.
So, since then, my eyes are once again VERY light sensitive and painful. I still feel the plugs and one wrong turn is pain! But I've learned to turn my head first and other ways to compensate I guess, to avoid that pain. I do notice the left eye isn't as bad as the ight-so that muct be because I had the ASP done.
BUT...since last week, I am now having vision probs-my eyesight wasn't that bad-just a low RX for glasses. I am seeing double..well its worse than double. W/both eyes open-its blurry and I see double, with only right eye open, I see double to triple going horizontially...BUT with only the left eye open I am seeing 6-8 of things!!!! It goes in a 'C' pattern and is vertical!! And its much worse at night! One star up in the sky...spreads out to 6-8!!
I had hoped it would clear up but its going on a week almost and I will be calling my eye doc tomm morn to get in there!! I tried calling today, but he was in surgery. I can't figure out what this could be from!!! I have searched to see if its an effect of the ASP...but to no avail and then again...its in BOTH eyes, while I only had the ASP done in the left so far!!
I'm afraid its related to the infection/light-sensitivity. I sure hope not as my Gram went blind in one eye due to an eye infection after a cataract surgery. And w/my history of Lupus, it doesn't help. There's always problems from everything-a simple cold for me takes much longer to get over, etc...
So now that you've read my long story-and sorry for that-but its necessary to 'see the big picture' lol, I'm wondering if anyone has had anything like this before? Especially seeing multiples of objects!!
Like I said, I AM calling him in the morn-just wanted to ge some input here.
THX for bearing with me-now I need drops from typing all this and satring at this screen too long!!
Cathy
A bit of history-I am 43 yrs old. I have Lupus, Fibro, CFS, RCE, Sjogrens, SVT(heart prob) and many other Lupus-associated disorders.
I've been dealing w/RCE for many years now-old eye doc scraped my corneas several times, lasted a while-then back again.
Well last Sept. I finally went and found a new eye doc in the area we now live-he's one of the top eye docs in this Tri-State area-NJ/NY/PA-even listed as such every year in a top doc mag. So I figured he knows his stuff! lol Right away he started me on trying to get this RCE under control. I had punctal plugs put in both lower ducts, but my corneas are so super-sensitive from yrs of erosions, just the plugs touching an area of my corneas caused me intense pain!! All it ever took to get a new erosion was me turning my head/eyes, opening them upon waking, etc...whenever my eyeballs would touch that little fleshy area where the ducts are, it would be very painful and cause more erosions-so now, there are these little plugs-granted small to begin with-but they make that little fleshy area, now a harder surface to my battered corneas. lol So, back I went and he saw right away the mess I was in and put contact bandages in both eyes. OMG instant relief!! lol
Anyways, went back and forth for replacements of the contacts-they have to do it every time because that's how sensitive my corneas are-I can't get near them without pain. So he decided he wanted to to the Anterior Stromal Puncture to try and get the RCE under control more-because the plugs weren't doing much due to the continuing probs w/my corneas. He said before we really see any results from the plugs, we had to get these corneas healed. So, I had the left eye done on Jan 4th. Oh what fun that was healing from!! Just like whenever I had em scraped-ugh!!! So, back and forth I go for checkups each week since-he is very pleased with the results so far-said the cornea is healing nicely-much to his surprise because of my history and all.
I did wind up w/an infection though, in both eyes, even though only the left was done so far. My eyes have been VERY sensitive to light-any light, but sunlight the most! He gave me FML(love that name-fits perfect for me! haha!) drops-steroid drops to use 3xs a day in both eyes. It helped for a time.
Well, last Wed and most recent appt. he took the BCLs out and left them out this time!! I became dependant on them protecting my corneas from the tearduct/plug area and preventing that horrid pain. But he said the contacts are only making my eyes even drier because they were in 24/7. As soon as they came out-I felt that pain with every move of my head/eyes!! He said we have to try it this way...most people don't feel the plugs, but like I had said, he said my corneas are just VERY sensitive to the pain from years of erosions.
So, since then, my eyes are once again VERY light sensitive and painful. I still feel the plugs and one wrong turn is pain! But I've learned to turn my head first and other ways to compensate I guess, to avoid that pain. I do notice the left eye isn't as bad as the ight-so that muct be because I had the ASP done.
BUT...since last week, I am now having vision probs-my eyesight wasn't that bad-just a low RX for glasses. I am seeing double..well its worse than double. W/both eyes open-its blurry and I see double, with only right eye open, I see double to triple going horizontially...BUT with only the left eye open I am seeing 6-8 of things!!!! It goes in a 'C' pattern and is vertical!! And its much worse at night! One star up in the sky...spreads out to 6-8!!
I had hoped it would clear up but its going on a week almost and I will be calling my eye doc tomm morn to get in there!! I tried calling today, but he was in surgery. I can't figure out what this could be from!!! I have searched to see if its an effect of the ASP...but to no avail and then again...its in BOTH eyes, while I only had the ASP done in the left so far!!
I'm afraid its related to the infection/light-sensitivity. I sure hope not as my Gram went blind in one eye due to an eye infection after a cataract surgery. And w/my history of Lupus, it doesn't help. There's always problems from everything-a simple cold for me takes much longer to get over, etc...
So now that you've read my long story-and sorry for that-but its necessary to 'see the big picture' lol, I'm wondering if anyone has had anything like this before? Especially seeing multiples of objects!!
Like I said, I AM calling him in the morn-just wanted to ge some input here.
THX for bearing with me-now I need drops from typing all this and satring at this screen too long!!
Cathy
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