Keratoconus - anyone have it?

applecruncher

applecruncher

SF VIP
Location
Ohio USA
If you have it, you already know it and don’t have to wonder what it is.

http://en.wikipedia.org/wiki/Keratoconus

It’s a degenerative eye disease which causes to cornea to change shape. This results in a patient being unable to drive (happened to me 10 yrs ago) and other visual issues, including pain and redness. I was first diagnosed in 1984.

Very frustrating, to say the least. I wore four (4) contact lenses for many years. (Glasses do not help keratoconus.) Piggy backs – gas permeable lens on top of soft lens.

I found a site/forum a few years ago where patients talk about the condition.

Had corneal transplant to left eye in 2008. Healing takes about 8 months. In 2009 I had retinal surgery to try to close a macular hole in left eye…..didn’t work. In 2010 I had cataract surgery. Dr. talked to me about corneal transplant to right eye. But due to the risk, I’ve been ‘getting by’….wearing two lenses in right eye and occasionally one lens in left. Lost left lens, so the other day I went to see Dr. to try to get better lenses.

Well, he’s going to order another right lens….as a back up in case I lose this one. But vision in left eye can’t be improved unless the retinal (macular) hole is closed.

Just don’t know if I want to go thru another surgery. During recovery for the retinal surgery (a few weeks) head must be kept tilted down. I had to rent special equipment which insurance did not cover.

(sigh…………)
 

Got the new gas permeable lens for right eye. I'll use old one for backup if I lose the new one. Waiting on the pack of soft lenses to arrive.
 
Sorry to hear you're suffering with this serious condition Applecruncher, I knew nothing about it. I never even heard of people having to wear more than one set of contacts at a time, that's gotta be tough.
 

Thanks, SB.

One thing that’s frustrating is when people tell me their wife, cousin, uncle, friend, …whatever… had laser surgery and now has 20/20 vision! Well, whoopee. That has noting to do with my condition. But I guess people don’t understand.

I heard a segment on this disease on Good Morning America, and they guy had very successful corneal transplant surgery in both eyes.

OTOH the husband of an acquaintance has retinitis pigmentosa and will soon be completely blind in his early 40s, and he's an attorney. She has to drive him everywhere and he has an aide who helps him with certain things. No surgery for that disease.

But now my issue is whether to have another surgery to try to repair the retinal hole.
 
I know a couple of people who had laser surgery for reading or other things, and they are now back using their glasses. Vision is so precious, I hope whatever you decide, it turns out well for you.
 
I have never heard of it either, Appe Cruncher. Cannot imagine having to place two contacts in your eyes. I had a difficult time with just one. May they find a solution that does not entail another surgery.
 

You must log in or register to reply here.

Back
Top