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! =)

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56huxley | @sjs1 | Aug 20 4:56pm

In reply to @fritzi "Who is this famous Florida Fuchs Dystrophy Group Ophthamologist? What area in Florida is here or..." + (show)

🩺 Dr. Mark Gorovoy (and his son Dr. Dimitri Gorovoy)
• In Florida, the Gorovoys are the go-to corneal surgeons for Fuchs’ endothelial dystrophy.
• Patients — even from out of state — often get referred specifically to Fort Myers because of their high surgical volume and excellent outcomes with DMEK/DSAEK corneal transplant techniques.
• Their names come up consistently in professional circles, at conferences, and in patient communities when someone asks, “Who should I see for Fuchs?”

⚖️ The Aftercare Challenge
• These surgeries, though quicker to heal than traditional corneal transplants, still require close follow-up in the weeks and months after:
• frequent slit-lamp checks
• monitoring for graft attachment
• intraocular pressure checks
• steroid management
• For patients who fly in from out of state, the logistics are tough:
• Immediate post-op: you typically need to be in town for at least the first few days, sometimes longer if rebubbling (reinflating the graft) is required.
• Longer-term follow-up: most patients must transition back to a local cornea specialist willing to handle the aftercare. That’s not always easy, since local doctors may hesitate to manage someone else’s graft.

🔑 Bottom Line
• Gorovoy is widely trusted for the surgery itself.
• The main issue isn’t the operation, but ensuring you have a reliable aftercare plan where you live. That usually means securing an agreement with a local corneal specialist before traveling for surgery.

fritzi | @fritzi | Aug 21 6:48am

In reply to @sjs1 "🩺 Dr. Mark Gorovoy (and his son Dr. Dimitri Gorovoy) • In Florida, the Gorovoys are..." + (show)

Thank you for your reply. I have heard of Dr. Mark, Gorovoy and have seen him and his associates, his daughter, Dr. Stacey Gorovoy.
Who is Dr. Dimitri Gorovoy? And if you don’t mind my asking, where did you hear of him?
And is he working in the same office with his father, Dr. Mark, Gorovoy?
Have you utilized the services of Dr. Mark, Gorovoy‘s office?
Thank you so much for taking the time to reply.

56huxley | @sjs1 | Aug 21 7:32am

In reply to @fritzi "Thank you for your reply. I have heard of Dr. Mark, Gorovoy and have seen him..." + (show)

I joined "Fuchs Friends "online. I kept seeing his name mentioned. I am no expert at all and later on found I have thinning of the cornea, not Fuchs, but the patient experiences on that website help with understanding the condition and treatment possibilities. I believe it is Dmitri G. , Mark G.'s son, that most of the Fuchs patients are referring to. However, there are other Fuchs surgeons and they have a list of "approved" surgeons in the US at their Fuchs Friends website.

sjorgie | @sjorgie | Aug 26 8:34pm

I was diagnosed with FCD about 20 years ago when I was in my forties. I am now 64. I told the Dr then that my primary goal was to keep my drivers license as long as possible and to maintain my level of vision enough to do my job. The Fuchs has stayed amazingly stable over the years and I’m actually on Ophthalmologist number 2! A cataract had grown in my left eye and my old Dr said that when it started to be too much, he’d do a transplant with a cataract removal. The new Dr said he wanted to do the cataract first and felt like it had a good chance of making my vision clearer. What to do?! When I asked what the chance was of accelerating the Fuchs, he said 100% because he had to go through the cornea. He was still confident it would work, but Fuchs being such an unpredictable disease, he couldn’t guarantee it. Yesterday, I had the cataract surgery and I was warned it would take a bit longer for the swelling to go down and for the blurriness to get better. Today at my post op appointment, I was 20/25 in both eyes! I literally haven’t seen this well in years. Despite having surgery yesterday, my eye pressure was within normal range. I hope it stays stable and we will see, but at this moment I’m so happy. We will do the right eye when the cataract in that one starts to interfere more.

nanzz1 | @nanzz1 | Aug 31 9:48am

I HAVE FUCH'S DYSTROPHY: HAD CATARACT REMOVED FROM LEFT EYE--TWO WEEKS LATER VISION NOT RIGHT, SOME PAIN. THIRD VISIT WITH ANOTHER (INTERN?) SAID NOT TO WORRY AS I HAVE HOLES IN MY CORNEAS AND I COULD HAVE A CORNEAL TRANSPLANT OR DSAEK PATCH. SO UPSET AS NOTHING HAD BEEN TOLD TO ME BEFORE THE SURGERY AND WHAT OPTIONS MAY BE IN STORE. SEEMS SOME EYES DO NOT RESPOND AS WELL. I DID NOT WANT THE OTHER EYE DONE UNTIL I FOUND OUT MORE. SEARCHING FOR A NEW OPTHAMOLOGIST THAT I CAN PLAN WHAT CAN BE DONE. RIGHT NOW I HAVE A MILD CASE BUT TO ME IT SEEMS I AM ALWAYS PUTTING DROPS IN, SOMEDAYS MY EYE NOT DEPENDABLE. HOPE THIS HELPS.

56huxley | @sjs1 | Sep 1 12:35pm

In reply to @nanzz1 "I HAVE FUCH'S DYSTROPHY: HAD CATARACT REMOVED FROM LEFT EYE--TWO WEEKS LATER VISION NOT RIGHT, SOME..." + (show)

The Corneal Dystrophy Foundation- the "Fuchs Friends " online resource has recommended (by patients) Fuchs specialists in your US area and worldwide and provides moral support by others with Fuchs.
Here's is an excerpt from the blog:
"please introduce yourself, include your signature, and ask any questions you might have by emailing them to FuchsFriends@groups.io. We are here to help each other.
Signe Maximous, Vice President
The Corneal Dystrophy Foundation.."