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Anyone here have Fuch's Dystrophy?

Posted by @bettyann in Eye, Ear, Nose & Throat, 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 '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! =)

Tags: eye conditions

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Posted by @anon13252470, Dec 14, 2011

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.


Posted by @bettyann, Dec 14, 2011

THANK YOU, TG, for answering. I, had a field of vision test about 3 weeks ago and the doctor said my vision improved. He showed me the print outs...and I'm going hmmmm...ok, if you say so! I don't feel that my vision in my L eye has gotten 'worse'... and so MUCH of how you see is 'in your mind'...of that I am positive. I got a little upset on another list after people were INSISTING that Fuchs is always bilateral and that I have it in the other eye, too. Well, then my doctor's are wrong.
I do the Muro5% 3 or 4 times a day and the ointment at night. I also use Ortho K daytime homeopathic drops...and right now I'm using the Systane Preservative free eye drops...because my doc said my left eye was SOOOOOO ok. Am doing that.
I am not an AMA-oriented person at ALL...take NO Rx's ...I'm 74 y/0...but it doesn't mean that I would be a fool and NOT 'go to the doctor' if I knew I absolutely HAD to...
I really do not think my eye surgeon handled the thing well. He should have SEEN the Fuch's BEFORE my surgery ... and he never really took his time...he wanted 'immediate answers' ...and so now I have to wear reading glasses and distance glasses, too. There are times, during the day, when my vision is 'clear'...others times when the blurriness in my L eye is predominant. Sometimes its just all up-ka-mixed! :)
I hope you will stay in touch. thanks and have a good day!


Posted by @oldasdirt, Jan 19, 2012

Hi, Betttyann, my name is Betty Jane. I too have FD. Your symptoms are much like my own. One eye is more involved than the other. I am 82 now, but was diagnosed probable about 10 years ago by an Optometrist, (I have been near sighed for since I can remember, so needed a new prescription) .He didn't put a name to it at the time but simply said I had a condition that eventually I would go blind from. Then added that probably I wouldn't live that long anyway as it was progressing quite slow. About 6 years ago I had cataract surgery on both eyes, by one of the best ophthalmologists in Spokane. He finely put a NAME to the disease, but I still did not know much about it until I found Mayo Clinics site. No one that I know of in my family has had it. No one has gone blind even. So I have no idea where it came from. I no doubt will have the transplant procedure at some point, but it is still progressing quite slow at this point, so I may indeed not outlive it. The Muro drops help my eyes feel more comfortable so have been using them. Hope this helps some how. Betty J


Posted by @bettyann, Jan 20, 2012

Hi Mary Jane,
Thank you for replying. I appreciated your sharing your story about FD with me.. I have appreciated ALL those who have replied.
At this point in time (and that may change)...I am still wondering whether or not I actually DO have FD in my left eye. So bizarre that it just 'happened' right after my cataract surgery in that eye. BEFORE my cataract surgery both eyes (a week apart) my FD eye (Left one) actually had more clarity and vision than my Right!
The optometrist I go to right now simply seemed to accept that surgeon's diagnosis.
I wonder if SOMEHOW that surgeon didn't mess up my eye...even perhaps a bad lens for the implant. I think that what I need to do is see another opthamologist. Since doctors have this thing going whereby they will NEVER speak against each other, it makes it twice as difficult.
Hopefully, whatever the condition 'actually' is...the Muro drops/ointment will not be making it any worse. It's just all so frustrating. Anyway, it was really good to hear from you... so thank you again, Mary Jane.


Posted by @oldasdirt, Jan 21, 2012

I would certainly see another certified ophthalmologist. One should be able to see if you had a botched up job of cataract surgery. (or maybe not botched, but some other problem.) Just tell them you are not happy with the results of your surgery, and see what they say. They should be able to tell if you have FD without your even saying anything about it before hand. If they don't catch it in the exam, then tell them what you have been told and you are concerned about it. You certainly have a right to know the truth about your own condition and need to know more information about the progress of the disease, and the options. Ask around about how to find a reputable ophthalmologist, or depending on where you live there are web sites you can go to to find the best. We hope for the best. Keep us informed as to what you find out. Betty J


Posted by @bettyann, Jan 21, 2012

Thanks again, Mary J ... that is exactly what I am going to have to do. I DO need to see another opthamalogist...and I will make plans to do that. In the meantime I will be moving to another location...and dealing with 'one thing at a time' is just about my speed anymore! =) i'll have my present doctor recommend one...from Kaiser...not from Denver Eye Surgeons.... hopefully I will be able to be in touch with one who will be more concerned about my eyes...than 'covering' for a fellow doctor.
Have a good rest of the weekend! Bettyann


Posted by @letsjam, Apr 8, 2013


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Posted by @magrange, Jan 21, 2012

Hi Bettyann, I think you will find that Fuchs Dystrophy is a genetic disease that eventually affects both eyes. I was misdiagnosed by two ophthalmologists before I got a third opinion at a teaching hospital and found that I had Fuchs and was actually in a late stage. They said the cataract surgery pushed by the first two doctors could not only have hastened Fuchs, but that my cornea could not have survived the cataract surgery and would have led to eventual transplants anyway (after paying the doctor $6400 out of pocket for the special lens). They never mentioned that I had the symptoms of Fuchs.

It's hard to find a good doctor. I'd suggest going to a teaching hospital if you can. Don't put too much stock in these doctor rating lists you find on line or in magazines because they are sometimes patients rating doctors by their communication, rather than technical, skills or political in that doctors get other doctors/friends on the Top Doctors lists. Go to US News and World Report for their Top Hospitals list. Find the closest one and pick an ophthalmologist there.

I am having a transplant Feb. 10 at Johns Hopkins in Baltimore. The progression of Fuchs from the initial finding of gluttata varies greatly, but if you have the gene, Hopkins told me that one of my parents definitely had it but may not have lived long enough for it to develop. My kids have a 50-50 chance of getting it as well, so should be tested. Doctors can tell if you have the gene in your 30s or 40s, even if you don't develop the symptoms for decades..

Also, the doctors often use a cornea thickness measure of 630-640 mm to determine diagnosis. But, my Hopkins doctor (who is passionate about this disease) says the number is somewhat arbitrary. Because I had had morning blurriness for two years, he said my cornea was already disintegrating even if my numbers were lower than 600. I thought I was just getting old! Maggie/Maryland


Posted by @cumminj1, Dec 16, 2011

I have FD and was diagnosed in 99. My mother also had it in both eyes. My wife was a nurse for an ophthalmologist for 29 years. While I wouldn't say your doctor is wrong I have never heard of a person having it in only one eye.

I have had cataracts removed in both eyes and so far it has not exacerbated the FD. However, it is my understanding that the doctor should utilize different techniques for the surgery in a patient with FD so as to minimize the damage to the endothelium of the cornea. If your FD wasn't diagnosed prior to the surgery I would assume they might not have used those techniques and if it wasn't I would think that either your condition was very mild or your doctor was not very experienced with it.

I would strongly encourage you to join a yahoo group known as Fuchs Friends. It can be found here.

The moderators of that group are involved with The Corneal Dystrophy Foundation which is also a good resource and can be found here.

The FF yahoo group is very helpful and the information from the knowledgeable members and moderators is current and as accurate as they can make it. I am just a member with no other interest.

My mother passed away at age 86 and never had to have transplants. However, she had macular degeneration as well. I am 62 and don't think I will make it that long without transplants. The good news is that they have surgery options now like DSAEK and DMEK that provide excellent results with little more inconvenience that you experience with cataract surgery. There is also promising research with stem cells. It would be wonderful if they could ultimately inject stem cells into the cornea and fix this problem.

That said the most important thing you can do is get informed and be sure that you have the best doctor you can find who is experienced with this disease. Many doctors don't have that much experience because there are relatively few with the disease.

Hope this helps and good luck.



Posted by @patt1, Apr 15, 2012

I was diagnosed with FD in April 2012. I am scheduled for cataract surgery in May. Did anyone have worse symptoms with FD after cataract surgery ??


Posted by @bettyann, Apr 15, 2012

Hi...I hope I am posting this in the right place. My computer is acting up a bit! 😉 I had cataract surgery one week apart from Denver Eye Surgeon this past July. My Right seemed right on schedule, cleared up.. I was SO happy. Then came the L eye surgery. It refused to give up that white blurriness even though the doc said "Will just take a little longer." Next appt between 2 and 3 weeks later, he saysto me: "Seems that you have a 'mild case' of Fuch's Dystrophy in your L eye"... didn't do ANY Google here I come. I am not one to 'sue'...but I had to learn to deal with the fact that they with ALL THEIR TESTS...did not DETECT this BEFORE the surgery.
The good news for you is, Pat: they KNOW about it ...and I have since read that yiou can have very successful cataract surgery as long as certain precautions are taken. I would make VERY SURE I had a discussion with them about this!!
Then I had know it alls tell me (from forums) "there is NO SUCH THING as Fuchs in just one eye." until I got discouraged by them. Excuse me for breaking a 'universal rule'... 🙂
My Fuch's eye is a bit..not much...worse right now then it was in July... but I have worked on allowing and accepting What not want to hold any negative thoughts that make life (or any condition) worse. I really had a not so good doctor...who rushed me through decisions... but what is, is...I have read of one case in which they 'fixed' a lady's Fuchs and did her cataract surgery at the same time. That's wonderful and hers came out so great!!
Please write again if you have any more questions. If I could go back in time, I am not certain I would have the cataract surgery done. Please just remember: MOST outcomes are wonderful!


Posted by @bettyann, May 3, 2012

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

Posted by Anonymous-24acbd7b, Mar 5, 2013

I hope I'm not too late to this discussion. My husband (now 64) had LASIK about 8 years ago and had reasonably good vision since. Late last year he was advised he needed cataract surgery. He had his lenses replaced 3 weeks ago (right eye) and 2 weeks ago. After the first surgery, we were reluctant to go through with a second one, but the doctor convinced us it would have a far better result since my husband's right eye has an anomaly on the retina. Since the surgery, his right eye cannot focus on anything most of the time, while the left eye is highly variable. Some days are much better than others, but he can rarely (one or two days in the past 2 weeks) see things at a distance. The variability is what led me here.

He was not disabled prior to cataract surgery, but is now, as he cannot even drive to work. I take him every day, but he can barely read the computer.

We have one of the best ophthalmologists in town, with the very latest equipment and techniques. It it possible my husband has undiagnosed Fuchs? How obvious is Fuchs to a highly skilled ophthalmologist? Is it possible it was undetected prior to either his LASIK or cataract surgery? We are definitely considering getting a second opinion (depending on what happens at the "3 week checkup" point). Anyone have any comments or suggestions?


Posted by @bettyann, Mar 5, 2013

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 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.


Posted by Anonymous-24acbd7b, Mar 6, 2013

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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