Anyone here have Fuch's Dystrophy?

Posted by Bettyann @bettyann, Dec 11, 2011

I would really like to hear from people who have Fuch's Dystrophy. I would especialloy appreciate hearing from those who have NOT yet had DSAEK surgery so far. This includes knowledge from those of you who have friends or relatives that might have Fuch's.
I was diagnosed with Fuch's (only in my Left eye) in July...it 'showed up' after my cataract surgery in that eye. Before that, I had no real problems in that eye (aside from the cloudiness caused by the cataract.
THANK YOU for any and all of your replies! =)

Interested in more discussions like this? Go to the Eye Conditions Support Group.

@rwinney

It sounds like you are making great progress. Such good news! Do you know why your doctor chose the DSO procedure for you instead of transplant? Obviously it's less invasive but were there specific qualifications that you met to have DSO?

Jump to this post

I'm sorry, I don't know the answer to that question. I have hearing problems, so I don't always hear what's being said. At the post-op appointment Dr. Gorovoy expressed his happiness with how well the procedure went and he mentioned how wonderful that I won't have steroid drops or the risk of rejection. I'm sorry, I sound like I was not very actively involved in the process. Usually I am very involved. I wanted DSO because of what I had read about the procedure, so I was just happy Dr. Gorovoy was recommending it.
I'm sorry I can't be more specific.

REPLY
@vickied

Thank you for your response. How is your vision now and how long have you had Fuchs and Macular?

Jump to this post

I have had Fuchs for about three years, and I was just diagnosed last month with Macular. My left eye was 20/100 with glasses, right was 20/40. I didn't realize my left eye was that bad.

REPLY
@denisemarys

I'm sorry, I don't know the answer to that question. I have hearing problems, so I don't always hear what's being said. At the post-op appointment Dr. Gorovoy expressed his happiness with how well the procedure went and he mentioned how wonderful that I won't have steroid drops or the risk of rejection. I'm sorry, I sound like I was not very actively involved in the process. Usually I am very involved. I wanted DSO because of what I had read about the procedure, so I was just happy Dr. Gorovoy was recommending it.
I'm sorry I can't be more specific.

Jump to this post

No worries, I was just curious. Feeling confident in your doctor is key. How wonderful Dr. Gorovoy recommended DSO. Having had transplants at a younger age, I'm always interested in learning about further advancements should I need to address Fuchs in the future. Will you continue to keep the community up to date on your progress?

REPLY
@rwinney

No worries, I was just curious. Feeling confident in your doctor is key. How wonderful Dr. Gorovoy recommended DSO. Having had transplants at a younger age, I'm always interested in learning about further advancements should I need to address Fuchs in the future. Will you continue to keep the community up to date on your progress?

Jump to this post

Absolutely!

REPLY

I have Fuchs dystrophy & am a candidate for DMEK in my left eye where I also have a cataract. I live in Canada & the Fuchs expert there was anxious to slit open both my eyes early this year…what an egomaniacal idiot!

I already know he gets paid by procedures so the more he cuts the more $$$ he makes. Currently I am using eye drops to remove the extreme water that collects in my eyes, especially in the morning, since overnight these defective cells collect way too much water.

I also have dry eyes. For that I use hylo gel. Hope this helps! Gratefully Marianne

REPLY
@irinig

I have Fuchs dystrophy & am a candidate for DMEK in my left eye where I also have a cataract. I live in Canada & the Fuchs expert there was anxious to slit open both my eyes early this year…what an egomaniacal idiot!

I already know he gets paid by procedures so the more he cuts the more $$$ he makes. Currently I am using eye drops to remove the extreme water that collects in my eyes, especially in the morning, since overnight these defective cells collect way too much water.

I also have dry eyes. For that I use hylo gel. Hope this helps! Gratefully Marianne

Jump to this post

I have Fuchs Dystrophy, cataracts, macular degeneration and Sjogren. I see a cornea specialist for the Fuchs, and cataracts and a retinal specialist for the MD.
Does the hylo gel work well for you. Is it prescription? I have received no direction for the Fuchs Dystrophy.

REPLY

Cataract surgery was done on my left eye a month ago. Fuchs Endothelial Dystrophy was only diagnosed 5 days later. Normally they do the other eye a couple of weeks later but I'm told I have to wait about 5 months. I have an eye test soon, struggling with left eye vision problems I didn't have before. Left eye lens was corrected for distance vision but colours are darker, clarity seems compromised and I may end up needing a corneal transplant. Driving is now a health hazard, and I have to cover my left eye when wearing my reading glasses. I never believed I had Cataracts. If only the corneal dystrophy had been picked up before the surgery! How are you managing to cope with your eyesight now? Did you get a corneal transplant? I hope everything has worked out for you now.

REPLY

I have Fuch's Dystrophy. I found the Fuch's Friends group invaluable. Here is a link to their website:
https://www.cornealdystrophyfoundation.org/
Love and best wishes to you! Do not worry, there are many new treatments today that weren't available 10 years ago.

Denise Scheppe

REPLY
@denisemarys

I have Fuch's Dystrophy. I found the Fuch's Friends group invaluable. Here is a link to their website:
https://www.cornealdystrophyfoundation.org/
Love and best wishes to you! Do not worry, there are many new treatments today that weren't available 10 years ago.

Denise Scheppe

Jump to this post

Thanks so much Denise for your support and the link 🙂 Love and all the best to you. Shedea

REPLY

Hi, so good to read the information. I just got diagnosed in 11/23 at 73. I noticed I have blurring of vision at night after using my eyes all day at work. My eye exam showed there was no changes needed in my glasses. I use the Muro drops of a day and generally before I go to bed. I hate the ointment but I suppose should use it more often at night. My eye doctor didn’t tell me
Much about it just that I have it and one day might need a corneal transplant. I think I may have some dry eye as one eye feels dry kinda stuck when I wake in the morning. I did notice the other morning when I got up the lettering on my tshirt looked smudged downward from the letters. Anyone doing anything different for treatment.

REPLY
Please sign in or register to post a reply.