Was dilagnosed today with fuchs dystrophy

Hmm not sure if the following information is what you want to hear, as it can sound scary, but that is the reason I came to this board is to get the honest truth from others that have the same experiences as me, which even with the limited replies I was so relieved to not be the only one experiencing the issues I am going through after dealing with my disease for over 30 years. I have ICE Syndrome, which I think closely resembles what you have been diagnosed with, though different obviously, and my disease has finally progressed recently to where I have fluid buildup in my eye because there is no place for it to go. As a result, I get blisters on my eyes. I have three of them on my cornea to be exact. When they pop it is quite painful to where unless you have gone through it, it is hard to describe, other than it is like the blister on the back of your foot after wearing shoes that aren't broken in. I, frankly, don't wish it on anyone. I am waiting for a cornea specialist appt in Jan 2027 at UF and the first thing I am going to ask for, that my other doctor did not want to do, is for a bandage lens. I have researched this and it seems that people that have like I do, bullous keratopathy, have received much relief as it keeps the air off of those open blisters once they pop and help with the healing time. Since yours is a relatively new issue, I hope you have many years where you don't have to experience it but when you go to the doctor next, ask them if that is an option should it get to that point. I am hopeful that by going to UF that I can volunteer for some trials to help others in their journeys with these type of disorders. I'm sorry I don't know much about what you have though I have read a bit when researching my own issues. Good luck and again I don't to scare you or others but just wanting to keep it real as my doctor I had been going to for many many years never told me that this would happen until it did. I was totally unprepared for this issue as I have episodes that start every 4th or 5th day after the ruptures, and those can last from 1-3 days, so this is a weekly issues for someone that works. It is definately a life changer.

Oh thank you for your response Lisa. I am still in a bit of shock and denial...but still facing reality too. The one think I know for sure is that I am going to get a second opinion. It was only after cataract surgery and MY request for a 2nd post operating appointment because I was not comfortable with the results, that my surgeon diagnosed me with Fuchs dystrophy! It was kinda..."Oh, by the way..." If I had not requested that appointment what would have happened.? I'm still doing research and looking for answers. Meanwhile your comments and information is appreciated. Can we keep in touch?

I have had a diagnosis of Fuchs for the past 4 years, right before I had cataract surgery. It has now progressed to the point that I am having a partial corneal transplant (DMEK) in a few weeks. I have an excellent ophthalmologist, who referred me to a specialist in Fuchs and in this procedure. The surgeon told me that the procedure has very good results for Fuchs and lasts at least ten years, which is as long a period for which there is data. I feel very fortunate. I will have to have both eyes done.

@joziez of course. Please let me know how I can help. In my research for my issue I have read where people have experienced this bullous keratopathy as a side effect after cataract surgery. Not sure why. Bullous Keratopathy has the same blister issues as what you have been diagnosed with. I have been trying many different things to lesson the pain when this happens and really the only think I have found that helps a little is a combination of advil and tylenol taken at the same time and going in the shower and taking a hot washcloth and holding it over my eye for a count of 10 for like 10 different times. LOL. I take it one day at a time and I think that is the best thing to do is get another opinion. That is why I went from my long time doctor to getting a referral to UF. Honestly I was given an appt 5 months later and have tried to get into other cornea specialist and run into the same issue of having to wait months so I am sticking with the University doctor. I hope you can get in soon and hope you have many years to go before experiencing this. Wish I enjoyed them more lol. Make sure you keep us updated as I would be curious to know what the other doctor says. I wish these doctors would tell you all the issues you are going to have before you finding out when it happens 🙂

@maudie400 just curious have you experienced the blisters in the eye? I am not sure how long something like that takes to hit but for me it was over 30 years. I was told by my doctor I should get a transplant with the thickness being more than I guess normal because of these blisters. However, I am trying to avoid that. Just curious if you have the blisters do you do something to help relieve the pain?

@elizabethwall

No. But apparently, I'm on the path to that, so I'm following my doctor's recommendation. It sounds awful.