Hi! I am curretnly 26 years old and was diagnosed with kerataconus in my late teens. At first I was able to wear soft contact lenses without any problems. Around the age of 23, my eyes started to get really dry and soft contacts became difficult to wear and were not correcting my vision properly. My eye dr. at the time fit me for gas permeable lenses and what a difference it made in my vision! Although they were uncomfortable at first, eventually I got used to them.
Just last year, I started to get a lot of corneal ulcers from my contacts. I switched eye dr's (due to insurance coverage) and he fit me with gas permeable lenses with a soft outer layer (not sure what they are called). At first they were more comfortable, but recently I've been having a lot of problems with them. My eyes are constantly dry, and at times when I put my lenses in it feels like I have acid in my eyes. They burn and tear terribly. The problem is mostly with my left eye (the kerataconus is worse in this eye) but sometimes in my right eye too. I don't know if it's because my contacts are a year old and have to be changed or maybe my cornea shape has changed??? Whatever it is, it is driving me crazy. most days I walk around with only my right lens in which corrects my vision enough for most things. However, when I cannot wear either lens and am stuck with my glasses I can barely see anything.
I am starting to get concerned. My eye dr. doesn't do much for me. I am constantly on Tobradex or Ciloxan for corneal scratches. He mentioned getting new contacts, but since they are not covered under my insurance it is quite a big expense for me right now. (By the way, I thought kerataconus lenses was a medical necessity and HAD to be covered under insurance)I am thinking of going to Wills Eye Hospital this summer (if they accpet my insurance) to see what they have to say since they are one of the best in the nation. I really don't want to get corneal transplants. Do you think I am at this point already or could it possibly be poor fitting contacts? Light sensitivity has also been a major issue lately. sometimes it is so bad that I have to wear sunglasses at night while driving. Any suggestions or words of wisdom?????
Thanks!!!
I don't have keratoconus, but I have a friend that does. He'll be getting a transplant this summer. He only has it in one eye right now, but he can't tolerate contacts. (he gave up on them rather quickly though because they were giving him problems.) In doing some research for him, I came across a wonderful website. It is the website for the Center for Keratoconus (which is unfortunately based in Europe). You can ask questions of other patients there as well as optometrists. The address is kcenter.org
Thanks Purple! I'll have to check that sight out a little later today! I need all the latest info. on keratoconus I can get!
Tell your friend that I wish him/her the best of luck with their transplant! Keep me updated as to how it goes!
I was diagnosed with Keratoconus several years ago, probably because I also have Retinitis Pigmentosa. The National Keratoconus Foundation is a wonderful resource of information. They have a website. I recently heard about and requested a booklet called "Corneal Transplant Surgery, A Reference Guide for Patients and Their Families", from their website. It is free-of-charge and very helpful. I have keratoconus in both eyes, my right eye being the worse. I am putting off a possible transplant as long as possible. I wear gas permeable contacts. I have to be careful how long I leave them in and a couple of times a month, I will have to leave one of them out for 2-3 days because it will hurt and feel swollen. I hope this is helpful!
That is very helpful! I am going to tell my friend about it. He could use that booklet!! He has a membership at healthboards, so I'll try to get him to come back here and chat with you about it. As far as I know, his surgery is scheduled for sometime in the end of July. I really felt that he should have given contacts more of a chance, but he feels otherwise and I can't tell him what to do. I just hate to see him go through surgery if there is something else that can be done.
Thanks for the info on the corneal transplant booklet. I'll have to check that out! I hope it doesn't come to that though!
I'm glad to know that I'm not the only one who struggles from time to time to wear both lenses. Currently I haven't been able to wear my left one for 8 days. As soon as I put it in my eye the tears start pouring out of my eye and it BURNS soooo bad! So I manage with only my right lens. I'm going to check into getting an appt. at Manhattan Eye & Ear Hospital or Wills Eye Hospital in Philly for this summer. Hopefully they'll be able to help!
There are two eye hospitals in NYC. One is Manhattan Eye, Ear and Throat Hospital, located at 210 East 64th Street and the other is NY Eye and Ear Infirmary, located at 310 East 14th Street. I have just come across a US News and World Report website that gives the ratings for some of the country's eye hospitals. My dr sent me to the Wilmer Eye Institute in Baltimore.
kerataconus and problems with contacts 
