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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@ccagack23

My name is Carole. I had cataract surgery in both eyes in June 2012. I was told by the surgeon prior to the surgery that I had FD. Six months after the surgery, I developed secondary cataracts which were treated by the same surgeon. At that time, I asked him why I felt discomfort in my left eye. He said it was due to how the incision healed. In the next two years, the discomfort in my left eye increase. Also, my vision was not clear like it was following the cataract surgery. I was referred to a cornea specialist who confirmed the FD in both eyes and suggested drops. They help some of the time. By 2016 my distance vision was worse (blurry) in both eyes and discomfort in left eye had increased. I had a cornea specialist in Chicago review my case. He said I had blisters on my left cornea due to the swelling and this was due to the FD. This was causing the discomfort.
My father had FD and a cornea transplant in 1996. I not anxious to have more surgery. Has anyone hade any experience with DSAEK or DMEK?

I have an appointment with a doctor at Mayo Clinic the end of July regarding my diagnosis.

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I am a candidate for DMEK. My mom had DSAEK 10 years ago and was told I would get it too. I am 64 and awaiting DMEK as soon as I Medicare qualify. I have FD in both eyes, the left much worse than the right. My name is Marianne

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@marymaurer

<p><strong>Fuchs Disease</strong></p><p>My husband has recently been diagnosed with Fuchs. No treatment at present excep eye drops. Anyone else dealing with this condition?</p>

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I am using 3 drops of Muro 125 in the ‘better’ eye and 4 drops of Muro 125 in the ‘worse’ eye. Also in the worse eye I close it shut with Muro 125 cream to keep the edema in the eye from getting too painful. Hope this helps your husband. Marianne

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@irinig

I have Fuchs in both eyes. I was told 10 years ago that I would get it as mom had a full-transplant.

Post-Covid I was diagnosed in both eyes, the left being way worse than the right as it also has a cataract.

Would appreciate hearing from anyone with Fuchs, especially pre-surgery. Many thanks. Marianne

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Hi Marianne, I have it in both eyes too. I'm being monitored every six months by a specialist at Johns Hopkins to determine when I will need surgery. I'm hoping for a miracle, and that I won't have to have the surgery. I'm told the recovery process is difficult and tricky.
Deloris

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Hi Bettyann, I'm just seeing your original post. I hope all goes well for your husband. My reply about my own experience is below, I also use Muro for the discomfort.
Deloris

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Hi = like you I have cataracts and Fuchs dystrophy. I have it in both eyes and was advised it is heredity. I am one of 8 siblings and only 1 sister had Fuchs also. No other known cases in our family line.
My sister has had the corneal transplant in both eyes and seems to cope pretty well. My surgeon advised that while neither my cataracts or Fuchs on their own would justify surgery currently - the 2 diseases together aggravate my vision. I am just able to drive still with glasses but not at night when all the lights just double blur and cause confusion. I expect I’ll have about another year before surgery is necessary on either one or both conditions.
Best wishes, Jules

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@irinig

I have Fuchs in both eyes. I was told 10 years ago that I would get it as mom had a full-transplant.

Post-Covid I was diagnosed in both eyes, the left being way worse than the right as it also has a cataract.

Would appreciate hearing from anyone with Fuchs, especially pre-surgery. Many thanks. Marianne

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Hi Marianne, I also have Fuchs in both eyes. I had cataract surgery on both eyes, one in 2001; the other in 2017. Other than the fact I have to wear contacts or glasses, both surgeries were a success and no impact on my vision. I do keep my eyes hydrated with drops numerous times daily. I’m in my 60’s and had Fuchs diagnosed in my 40’s with no problems with my vision. Are you anticipating surgery because of your mother’s condition, or have you been advised to prepare yourself for surgery? My ophthalmologist told me one of the keys was hydration, both by drops and drinking water daily.
Good luck, and know not everyone needs a transplant.

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@odreid

Hi Marianne, I have it in both eyes too. I'm being monitored every six months by a specialist at Johns Hopkins to determine when I will need surgery. I'm hoping for a miracle, and that I won't have to have the surgery. I'm told the recovery process is difficult and tricky.
Deloris

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I hear the same…thank you for helping me. Have doctors traced FD to food & eating habits? I wonder if FD is just genetic or does it have to do with what we put in our bodies over the years…

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@sharonfranks1119

Hi Marianne, I also have Fuchs in both eyes. I had cataract surgery on both eyes, one in 2001; the other in 2017. Other than the fact I have to wear contacts or glasses, both surgeries were a success and no impact on my vision. I do keep my eyes hydrated with drops numerous times daily. I’m in my 60’s and had Fuchs diagnosed in my 40’s with no problems with my vision. Are you anticipating surgery because of your mother’s condition, or have you been advised to prepare yourself for surgery? My ophthalmologist told me one of the keys was hydration, both by drops and drinking water daily.
Good luck, and know not everyone needs a transplant.

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Thank you! My mom has almost no vision from the other eye, the non-transplanted one…thank you for your words of wisdom & encouragement. So did you have 2 DMEKs or nothing at all? Could you clarify? I have way many epithelial cells in my left eye, the one that also has a cataract…

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@irinig

Thank you! My mom has almost no vision from the other eye, the non-transplanted one…thank you for your words of wisdom & encouragement. So did you have 2 DMEKs or nothing at all? Could you clarify? I have way many epithelial cells in my left eye, the one that also has a cataract…

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I am fairly uneducated in regards to Fuchs. I just do what I’m told by my ophthalmologist. So I can’t answer your question without asking a question. What are DMEKs? Please answer that and I can respond.

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@sharonfranks1119

I am fairly uneducated in regards to Fuchs. I just do what I’m told by my ophthalmologist. So I can’t answer your question without asking a question. What are DMEKs? Please answer that and I can respond.

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I think DMAEK is the procedure where the entire first line of sight lens is removed & the lens of a person who has donated their eyes, gives to people like us with FD. This is the procedure my mom had 10 years ago in her right eye. She still sees out of her right eye as the transplanted cornea works. Also a young man was good enough to donate his eyes into the eye bank.

DMEK, I am told by my ophthalmologist, is a newer procedure whereby new cells are placed inside the existing cornea and they can grow, healthily at times, sometimes not…I was told my left eye needs DMEK.

Hopefully this clarifies my last response? Many thanks Sharon. Kindly, Marianne

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