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Old 12-14-2006, 06:45 AM   #1
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Reyne HB User
All RCE suffers...I need advice

I have had RCE for 3 yrs attacks have slowed down but still occur. I scratched my cornea. Well, Oct 06 I found a Dr to laser PTK instead of sending me home with drops, gels and the sorry just have to give it time.

I am scheduled Jan 15th and have NOT had a erosion since. Not sure if I want to go through with PTK!!!??? I do not want to cause pain when things are going well...for now atleast. The Dr did say I had a distrophy....what do I do??????

What would you do??? The PTK I have heard is just like having a bad erosion...I do not want that. Is my eye healed or am I fooling myself???

 
Old 12-19-2006, 11:08 AM   #2
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squirrel2349 HB User
Re: All RCE suffers...I need advice

Hi Reyne,

I'm no medical expert, but if it was me I would postpone the procedure and see if you continue to be erosion free. Your RCE may not be cured yet but 2 months without an erosion is a great accomplishment and PTK is surgery so besides being painful it has risks just like any surgical procedure; so why risk it if you are doing better. I too have a dystrophy and have suffered with RCE for about 4 years now. Lately it has been better, though I know I'm not yet cured but at least the major episodes have diminished. I wish you the best of luck in whatever your decision is. If you do decide to go through with the PTK, please post and let us know how it went. My doctor said that is the next option for me but I'm hoping I never have to resort to that option.

 
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Old 12-21-2006, 06:14 AM   #3
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Reyne HB User
Re: All RCE suffers...I need advice

Thanks Squirrel...I did cancel a few days ago. I just did not want to go through more pain since I have been erosion free. I was lost just wanted and end to this and never have to carry around muro and drops again.

I just did not know what to do!!?? And nobody understands except those who have RCE. And the Dr's well they run a business. But my Dr left it up to me and I decided to wait.

And sure enough I have been having small ones but nothing major.

 
Old 01-16-2007, 09:04 PM   #4
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sleepless221 HB User
Re: All RCE suffers...I need advice

I am happy to have found this thread. I hope all is going well with you, Reyne. I have been having problems with RCE for about a year, due to a fingernail scratch injury. The muro drops and ointment worked for a while, but I had minor then severe recurrences. I started wearing a "bandage contact lens" on Dec 15. This has been a mixed blessing, since it seems to offer some protection, but also causes some irritation due to dryness in wintertime. I had to remove it last night due to a major erosion--just too uncomfortable to keep it in. My doctor is generally encouraging and empathetic. My spouse, not so much.

What are others using in addition to muro to offset dryness, if anything? My doctor did not give suggest anything for dryness until I posited that dry heat/cold weather was exacerbating my erosions. Staying on top of the dryness seems to be key to preventing erosions.

 
Old 01-17-2007, 10:58 AM   #5
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chuckcap HB User
Re: All RCE suffers...I need advice

Try drinking plenty of water, avoid caffine drinks, take omega 3 suppliments. Water works best. On wake up try natural tears or drops before you open eyes. How can you get a RCE with a contact in place? It sounds like the contact is sticking possibly? Good luck, I feel your pain and frustration.

 
Old 01-17-2007, 09:39 PM   #6
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sleepless221 HB User
Re: All RCE suffers...I need advice

Thanks, I will definitely make a point to drink plenty of water and try to avoid caffeine although I am caffeine-dependent these days....

I posted a lengthy reply about the bandage contact lens on the corneal abrasion thread that Evie4 started. Yes, it does feel like it is sticking. It seems to be a delicate balance --generally the contact should provide a smooth surface that is less likely to stick to the cornea, but it is challenging to keep the contact lubricated, so it sticks.....

It is painful and frustrating, but my doc is generally encouraging--just because it hasn't healed yet doesn't mean it will never heal. Take care and thanks again for the good suggestions.

 
Old 01-18-2007, 01:08 PM   #7
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chuckcap HB User
Re: All RCE suffers...I need advice

I am wondering if you can just use the contact at night for sleeping rather than all day? It would seem to me that if your gentile enough it won't mess with healing cornea? It has to be better than RCE plus the eye gets more oxygen during the day. Just wondering. FYI This the 2nd night with no RCE wearing the contacts. So far so good with it.

 
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