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! =)

@bettyann

Is there anyone here that has Fuch’s Dystrophy that would care to discuss any kind of progress you have made lately?

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I would definately get a second opinion. Please do this because, to me, it will allow you to have peace of mind and THAT is worth a fortune!
I am not sure I understood everything in order, so please forgive me if this is not ‘adding up’ right! 🙂
LASIK surgery is simply done to better your vision so that is no (or very little) need of contacts or glasses… I am not sure when or why they inserted the lens into his eyes…
Lens were inserted into both my eyes after each L & R cataract surgery… My R eye turned out fine… my L eye didn’t want to lose that initial ‘looking through white waxpaper’ vision. The Dr said ‘possible Fuchs’…This was 1 1/2 years ago… Since I didn’t seem to have ANY problems in the R eye (until the last couple of months vision is more dim) I listened to the person who told me it was probably a botched surgery (scraping away too many of the epithilial cells) which has the same EFFECT as Fuch’s.. blurry vision and horrid sensitivity to light.
Through some office slip ups I never rec’d my appt notices (but I STILL should have been more persistant about going back to see a specialist but FEAR kept me from doing it…being really honest here)
Two weeks ago I had an appt and 3 drs examined my eyes. YES, it IS Fuchs…and it has gotten very bad… and yes, I was not going to be the only person i nthe world with Fuchs in just ONE eye…the dimness in my R eye now is from the cornea thickening (beginning of Fuchs) and I have appt to see a cornea specialist on the 21st of this month. I was told DSAEK surgeries are highly superior to a total cornea transplant (which is what they did for Fuchs prior)… So…I’m waiting to see.
Fuchs might be difficult to diagnosis right in the very beginning but definately not as the water blisters on your cornea begin to appear.
I read in a number of places that cataract surgery can bring out the Fuch’s…but eventually the Fuchs would have appeared…so between my cataracts AND the Fuchs I am sure I would have lost all my vision eventually.
I am sorry if this is a ‘mixed up’ way of telling this tale… but I guess my main message to you would be to definately get a 2nd opinion and be persistant in expressing your doubts and fears…just lay it all out on the table…
Best wishes to you!! As long as your reply to a person (like you did to me) a notice will show up on my email… that way you know you will be addressing it to someone with similar questions and answers.

Bettyann

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@bettyann

Is there anyone here that has Fuch’s Dystrophy that would care to discuss any kind of progress you have made lately?

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Thanks for the quick response, Bettyann.

I am in total agreement with you that a 2nd opinion will be most helpful. I think we’re best off visiting an ophthalmologist who does not specialize in the most profitable arms (cataracts and LASIK) but primarily in overall eye health. It seems as if many doctors protect one another.

Ultimately, we need to get a correct diagnosis for my husband, but aren’t doing anything until after his 3-week checkup (next week).

Good luck on getting that surgery, and please let those here know more about it. Are transplant cells readily available, so that the surgery can proceed quickly…or is there a waiting list?

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@anon13252470

I was diagnosed with Fuch’s dystrophy this past summer and have been using Muro drops with some success …….. At least I think it will prolong a surgical procedure . I personally don’feel the condition is improving but the objectivity tests,i.
e. cornea thickness, sight clarity are showing very slight improvement and no more disease progression at the moment.

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h

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Anyne diagnosed with Fuchs dystrophy? Have yogu had surgery? I am interested in descemets stripping or something less severe than a cornea transplant. Anyone undergane these less taxng procedures? How about cataracts? Did you have

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Has anyone with Fuchs had a problem with vision after cataract surgery.

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@veriska

Has anyone with Fuchs had a problem with vision after cataract surgery.

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Hi, @veriska – welcome to Mayo Clinic Connect. I'm hoping that members @bettyann and @oldasdirt will return and offer some input on having a vision problem after cataract surgery for a patient with Fuchs'. Also, members like @jakedduck1 @cherriann @peach414144 @hikergirl who have talked about cataract surgery may have thoughts to add.

You may also be interested in this Mayo Clinic information:

– on Fuchs' dystrophy:https://www.mayoclinic.org/diseases-conditions/fuchs-dystrophy/symptoms-causes/syc-20352727

– on cataract surgery: https://www.mayoclinic.org/tests-procedures/cataract-surgery/about/pac-20384765

What type of vision problem are you or a loved one experiencing, @veriska? When was the cataract surgery?

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I too was diagnosed with Fuchs at my final appointment post cataract surgery in both eyes. (June 2019) My eyesight remained cloudy and I had eye pain/pressure (like someone was pushing my eyeballs out) after the surgery. I was prescribed bifocals which have helped me see, but have done nothing for the blurriness and pressure. I was told to get MURO ointment and use it at night. No discernable difference. I am actively seeking a corneal specialist who has worked with many Fuchs patients. Hartford to NYC….willing to travel for right person. I will update when I know something further. Nancy Cullen

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Cateract surgery in one eye in April and the other in May 2019. At follow up in June I was told I had Fuchs which is why I have no eyesight improvement, halos, pain and blurriness. Dr. said use Muro ointment at night and scheduled an appt. for 6 months. No way. Even with newly prescribed bifocals, I can't see well enough to drive and any light is painful. I am in need of information, just as you are.

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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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@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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Hi Carole
I hope your visit went well the end of July.
I'm Rachel and when I was 40 (2011) I was tested for Fuch's dystrophy due to my father having it. His diagnosis was over looked for many years therefore he suffered longer than he should have. He begged me to get tested because its hereditary. My vision had always been poor so I wore tri-focals in early 30's. Knew things weren't right. Surely I tested positive. After my diagnosis, I was able to get 3 more years out of my eyes before things became intolerable. My symptoms were, deterioration of vision regardless of strongest eye glass lenses. Could not read Street signs, computer print, small print, patterns, numbers. I strained and became dizzy and could not focus. Bright lights, contrasting light, overhead lights did me in. Gray dreary days were the worse. Windy days, fans or going outside from indoors made my eyes water and run. Mornings were a blur and foggy, took long time to regain focus. Laser or flashes of lights (movies/fireworks) gave me pain. The less sleep I got, the worse my eyes responded. In 2013 my cornea specialist scheduled me for 2 cataracts surgeries followed by 2 partial thickness corneal transplants. My father had needed 2 full thickness transplants but progress had been made in this area when it was my turn. I didn't want to be set back for too long so I pushed and had all procedures done in under 5 months (a working Mom and needed to get these baby blues ready for my kids sports seasons).
Cataracts were pretty simple and 1 transplant was as simple as could be expected however, my 2nd transplant was a bit more complicated so, I was left with lasting scar tissue and one pupil smaller than the other. All in all, I got through it and my vision was perfectly restored!!!! BLESS my Drs heart because it is without a doubt, scary stuff to go through. Along the way I had several loose stitches (normal) which are very agitating and need to easily be pulled out. 4 years after my surgeries I developed secondary cataracts which created double and blurred vision….easy laser procedure to fix.
Today, 6 years later, I am still incredibly grateful for my vision. My only remaining and lasting problem is sensitivity to light. Still can't watch fireworks. Can't go to a concert because of lasers and lights. Can't do movie theaters. Have to wear sunglasses and a hat with brim in all artificial lighting situations…basketball games, stores, arenas etc… Hate winter because natural light is shortened. Im told it's lasting effects from my scar tissue, unique to my personal experience. I still don't settle for that but no-one has any more answers. So, for 6 years I have struggled with night driving and finally gave it up last year (age 48), not happy!!!
At least I can see and for that I remain incredibly grateful. So sorry for the book. I hope it may have helped you or someone moving forward. The disease is rare and we must be some special people! Procedures have come so far and an experienced cornea specialist is all you need for the right help. Best of luck to you and I'm happy to answer any questions you may have.

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I was diagnosed with Fuchs after cataract surgery in both eyes. My eyesight was worse after the C surgery…vision, cloudiness, loss of peripheral vision, ghosting, severe sensitivity to light and periodic shooting pain in my right eye. I was only diagnosed with Fuchs and told to use MURO ointment at night, in April 2019. I will seek out a Fuchs specialist after my next checkup with the group who diagnosed my Fuchs. That appointment is scheduled for December.

I strongly recommend your joining the Fuchs Foundation Group.

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@grmnancy

I was diagnosed with Fuchs after cataract surgery in both eyes. My eyesight was worse after the C surgery…vision, cloudiness, loss of peripheral vision, ghosting, severe sensitivity to light and periodic shooting pain in my right eye. I was only diagnosed with Fuchs and told to use MURO ointment at night, in April 2019. I will seek out a Fuchs specialist after my next checkup with the group who diagnosed my Fuchs. That appointment is scheduled for December.

I strongly recommend your joining the Fuchs Foundation Group.

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That is good to know. Thank you. I will look into it. All the best to you.

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