Wednesday, October 24, 2012

FOXNews.com: Fuchs' corneal dystrophy: Dealing with slowly going blind

FOXNews.com
FOX News Network - We Report. You Decide. // via fulltextrssfeed.com
Fuchs' corneal dystrophy: Dealing with slowly going blind
Oct 24th 2012, 10:00

I was recently diagnosed with Fuchs' corneal dystrophy (Fuchs) in my right eye. I'd like to share my experience.

According to the Mayo Clinic, "Fuchs' dystrophy (fooks DIS-truh-fee) is an uncommon, slowly progressive disorder that affects the cornea — the transparent front surface of your eye. Fuchs' dystrophy is a type of corneal dystrophy, a group of conditions that may cause a hazy deposit to build up over the cornea."

My optometrist first recognized that I had Fuchs when I went to see him for cloudy eyes. To give you as description, it was as if my right eye was steamed over like a windshield. I thought it was eyestrain. I was wrong.

From there, the optometrist referred me to a corneal specialist who confirmed the diagnosis as Fuchs. He prescribed me with over-the-counter eye drops called Muro 128, which is basically sodium chloride. This helps dry out the cornea to slow down the leak, which causes the cloudiness.

After two weeks of using Muro 128 eye drops every hour on the hour, the specialist told me that the only cure would be a corneal transplant because there is no cure for Fuchs.

It would continually get worse, but it could take days, months or years. However, he would not do a transplant until I went totally blind. Wrong answer, in my opinion.

At that point, I did consider myself totally blind in the right eye unless I used the Muro eye drops every half hour during my waking hours. I also wear glasses, but the right eye prescription was totally wrong by this time.

So, after two months of carrying Muro 128 eye drops in a tiny pouch around my neck, constantly putting in eye drops, I decided it was time for another opinion.
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I found a young, enthusiastic ophthalmologist named Dr. Albert Caruana at Cleveland Clinic Florida who specializes in corneal transplants. I say "young and enthusiastic" because as I get older, the doctors look like kids to me, but in my case, I was happy to find a doctor that was almost right out of medical school.

Dr. Caruana did the corneal transplant within a few months. It was a simple day surgery followed by check-up appointments after the first few weeks.

I've followed his instructions to the letter.

I felt it was only a matter of time before I was able to get the corrected prescription for my eyeglasses and move on with my otherwise healthy life.

Unfortunately, five months after the surgery, I woke up one morning with no sight in my right eye. I couldn't see color, only black outlines of people and total blur.

I rushed in to see Dr. Caruana and he informed me of the good news and bad news. The good news was that I have a very healthy immune system. For a 59-year-old woman, that's always good news.

But the bad news was that my immune system was rejecting my new cornea. My question to him was, "Now what?"

It's been two weeks since the rejection. I'm on medication and once again the Muro 128, but my sight has not returned yet. I may need to have another corneal transplant, but the doctor is hoping the meds will help.

While the corneal transplant has been more of an ordeal that I had ever expected, I don't regret having the surgery. I work every day to maintain a positive attitude and have full trust in my doctor, which is essential when having this type of procedure.

If there's a possibility that you may have Fuchs' corneal dystrophy, don't wait. Make an appointment with an ophthalmologist who specializes in corneal conditions.

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8 comments:

alien said...

Thank you for sharing your story. I do go to a specialist in Boston and he ended up doing experimental design surgery that has been successful so far. He stripped the dead cell under the assumption that peripheral cells will vrnach out to the center and after two years they have in right eye. This week did the left eye so let's see. They also removed cataracts. So so far no need for cornea transplant. Vision on the right eye is great far distance now. For the left time will tell in few more weeks.

rednakedy said...

I too, have Fuch's. AND cataracts. The catracts make me not a great candidate for corneal transplants. The Fuch's makes me not a great candidate for cataract removal. I have been in near constant pain for the past several years. Pretty much the only time both my eyes don't hurt is when I walk my dogs on cold breezy winter days. Cold air blowing in my eyes dries and chills them nicely. Muro drops just seem to make my pain worse. Hot, humid air makes the pain worse. Any kind of cold or sinus infection makes me want to claw my eyes out. I have started wondering if marijuana would help.
In the past six months two different eye doctors have advised me that I should go ahead and have my cataracts removed now, before the Fuch's get worse and before the cataracts get harder. "Normal" standard cataract removal is covered by my insurance. But because of the Fuch's the surgeon wants to do "laser assisted cataract removal." To lessen the probability that the catract removal will worsen the Fuch's. Insurance refuses to cover the cost of that laser "upgrade." So we have scraped, saved, done yard sales, etc. to be able to put away that extra $1000 per eye. And scheduled the surgeries for about 10 and 12 weeks from now. Got paperwork this week about the upcoming procedures that included info about the tree kinds of drops I will have to start using a few days before each surgery. Looked into the cost. One has full prescription coverage. Another is at the highest tier---cost? Over $450. Per eye. The third one is NOT prescription and therefore no coverage by insurance. Anticipated cost? $972. Per eye. So my $2000 out of pocket cost suddenly became more like $5000. Tell me---who has $5000 just lying around? I sure don't.

Alien, I hope you will keep us updated on your experience. I will be checking back and hoping it continues to go well for you.

Unknown said...

I have had Fuchs for many years. I had cataracts done in both eyes 8 years ago. Four years ago I went to a corneal specialist who said it was time to have a corneal transplant in my right eye. My vision had deteriorated to the point of being a disability this year (2018).

Miraculously my vision has greatly improved over the last month. Where a lighted room used to look smoky, it is now clear. I can see distance...sharp edges far away.

I started taking CBD/THC for body pain about four months ago. This being the only thing I have done differently, I have researched lightly online and discovered that there is solid evidence that CBD is effective in treating neurodegenerative disease.

Has anyone else experienced this improvement from using CBD/THC? Or know anything about this?

Unknown said...

I too have fuchs disease. After using cbd oil my vision is clearer and it also feels that I am also creating more natural tears in both eyes.

Paularay said...

How much and what mg do you use ?

Unknown said...

I was told by a specialist 5 years ago that I needed to have the corneal transplants due to Fuchs. I did not...my regular eye doctor said that transplants come with thier own problems.
2 years ago I started taking 5/5mg THC/CBD per day for pain.
My eyes have definitely improved and am fairly certain it is the CBD/THC.
I understand that in Italy studies are being done using thc drops for treatment of fuchs and they have produced results that "warrant further study".

Unknown said...

5mgthc/5mgcbd combo once daily.

Unknown said...

I have Fuchs dystrophy, did your medical doctor prescribed the thc/code drops? Do you use the drops in your eyes ?

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