Anyone here have Fuch's Dystrophy?

Update - I had my surgery. On April 12th I went to my two week post-op appointment. I could read four more lines and my doctor was extremely pleased with the start of endothelial cells migrating along the edges of the surgery. I go back in 7 weeks. In the meantime I continue the glanatech drops from Japan. I'm already seeing more than I was at my post-op appointment last week. I'm extremely happy. Wishing the best to others who have Fuchs' dystrophy.

Thank you for sharing. I have Fuchs and Macular. I also have Sjogren. Last visit with my ophthalmologist was recent and he gave me the diagnosis of macular degeneration. He said see you next year and ordered a new prescription. I lost vision in the left eye, but was told the macular is mild. He is supposed to be a specialist in cornea, but I am wondering if I should see a specialist for the retina. Any advice?

Thank you for sharing. I have Fuchs and Macular. I also have Sjogren. Last visit with my ophthalmologist was recent and he gave me the diagnosis of macular degeneration. He said see you next year and ordered a new prescription. I lost vision in the left eye, but was told the macular is mild. He is supposed to be a specialist in cornea, but I am wondering if I should see a specialist for the retina. Any advice?

Yes, (age related) macular degeneration or wet macular degeneration are matters to be dealt with by retinal specialists.

Corneal specialists specialize in corneas (Fuchs Dystrophy being a corneal condition)..

Macular degeneration comes in various types and degrees of severity. (One is "dry" the worst level being "geographic" and which can advance to "wet" macular degeneration about 10% of the time.)

Vision is precious and should be dealt with with the utmost care. For the most part, damage from either of the retinal conditions you mentioned is permanent although specialized treatments can ameliorate the progression and sometimes even improve acuity.. This applies especially to " wet" macular degeneration which involves the growth of tiny abnormal capillaries behind the retina which leak, causing the death of retinal cells.

Most fortunately, there is now an effective treatment involving injections into the leaking retina (first sign, fluid behind the retina) which though incurable to date, can slow the progression to vision loss. It is "popular' to claim it doesn't cause blindness but that's just a falsely reassuring claim, because although it destroys central vision it leaves some peripheral vision. That much limited peripheral vision is not adequate to read, recognize faces, or to drive, though.

It must be taken very seriously and followed by the most qualified retinal specialists to maximize the quality and length of ones visual acuity.

(Speaking as someone who saw specialists in both areas at the Wilm's Eye Clinic at Johns Hopkins, though, my corneal problem was trivial.)

If I had gone to an ophthalmologist (then to a retinologist) as soon as I was symptomatic (usually blurriness and/or damage to the central vision in one or both eyes) I might have prevented permanent damage to the affected eye. (That would have been through prompt injections in it. )

That damage involves spots, or dark areas in the affected eye(s), also waviness so that when looking at text, it appears to go up and down. I thought my new glasses had been mis-ground. If I hadn't delayed a careful eye examination, I might have done sooner to the right specialist and diagnosis, before the visual distortion was permanent - so far, only in one eye. At least, the damage is so far, not that bad thanks to the injections.

Rarely (I hope I am one) it doesn't spread to the "fellow eye".

PS The eye injections aren't nearly as ghastly as one might expect. The surface is first numbed and the injection is very fast.

Hi Bruce,
I ordered from the pharmacy that has a box of 5 bottles. The hardest part for me, was paying for the eyedrops. It was complicated. However, the drops arrived as promised.
I am in the Upper Peninsula of Michigan right now. I live in Naples, FL. I am very fortunate to have one of the top surgeons, Dr. Mark Gorovoy as my surgeon. He's been doing DSO surgery for 8 years. Surgery went really well and I plan to have my left eye done when we return to Florida in November.
I'm sure your surgery will go well! Keep up with your eyedrop regimen and you will have a successful outcome! Let me know how you are doing. Best wishes, Denise

Dear Vickied,
I started out with a diagnosis of Dry Macular Degeneration. I was monitoring my vision and making many appointments with my Retina Specialist because my vision was deteriorating. I had been told to call for an appointment any time it appeared that my vision was getting worse. The concern was that it could be turning into wet macular degeneration and I would need shots in the eye to save my vision.
When my Retina Specialist diagnosed my problem as Fuchs Dystrophy, he discharged me with instructions to call for an appointment if I saw a big "S" on the Amsler Grid.
That was my experience with my Retina Specialist. I don't know if you should see a Retina Specialist. However, it might be nice to establish a relationship with a Retina Specialist.
I would definitely see a Cornea Specialist for my Fuchs. There is a support group called "Fuchs Friends" on the Internet. They have a database of the best Cornea Specialists from all over the world. Here is their website: https://www.cornealdystrophyfoundation.org/support-groups.
I wish you all the best!
Denise

Hello @denisemarys - thank you for sharing your Fuchs journey. I'm happy to hear that you were reading better back in April. Fantastic that you avoided a cornea transplant. How is your improvement now, after time and continued use of the drops? Wow, interesting about the drops being from Japan. They must be cutting edge, and expensive!

DSO is new to me. Ten years ago I had partial thickness corneal transplants (aka DMEK) in both eyes which took place couple of months after both cataracts had been done. I don't recall DSO being an option then, although, I may not have been a candidate regardless. My surgeries were a success, thankfully, and still going strong. At the time I was told the transplants would last around 10 years. I'm 53 now and recently hit my 10 year anniversary, and while there are signs of cell loss, I rarely have visual disturbance. I did a little online research to get up to speed and found this article from the American Academy of Ophthalmology to be helpful:

Beyond Corneal Transplants for Fuchs: Descemet Stripping Only:

- https://www.aao.org/eyenet/article/beyond-corneal-transplants-for-fuchs

What were the primary reasons your doctor (or you) chose DSO for your Fuchs instead of transplants?

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

My doctor is Mark Gorovoy, M.D., located in Ft. Myers, FL. He has been performing DSO surgeries for eight years with great success. He contributes to the body of knowledge about successful DSO procedures.
Dr. Gorovoy was also instrumental in the development of the DMEK procedure. I trusted his judgment with regard to my Fuchs, and he thought I was a good candidate for DSO. So far, he has been correct. I can see almost as well now with my right eye (the one that underwent DSO), as I can with my left eye. I don't have the exact prescription. I am waiting until Dr. Gorovoy does DSO on my left eye to get glasses. The improvement from my initial post-surgery vision has been tremendous. I went from foggy vision to being able to read the fourth line down on the vision chart.
Blessings to you,
Denise