I was diagnosed maybe 20 years ago. Until 6 months ago I was fine snd being monitored. Last year a cataract started in my right eye and it's pressure peaked to 34 with 14 in the left. I took drops which worked but at 6 months I was at 22 on my right. We decided to do SLT laser surgery. Painless, took 15 minutes and can be repeated. 6 months later my right eye was at 16. Success of a cataract surgery depend on the strength of the zonules in my eye. There are new devices, lenses and techniques to help in a successful outcome. My ophthalmologist has done an untold number of pseudoexfoliation cataracts and claims he's had no unrecoverable outcomes...yet.
I was diagnosed with this disorder in 2012 (left eye significant, right eye better), had 3 SLTs, cataract surgery both eyes, years of drops, a trabeculectomy in 2022. Since having the trab, I do not take drops, and iop has remained stable! Sought a second opinion at Johns Hopkins-Wilmer and surgery was recommended (by doc who had done the cataracts, known and respected by the Hopkins expert). Glad I had the trab but surgery was a bit more complicated than the cataract surgery.
There are two glaucoma research/support groups that I follow:
Glaucoma Foundation
Glaucoma Research Foundation
Happy to respond to any questions. Sally
Although I have had lifelong annual or more frequent eye exams it wasn't until my preliminary cataract surgery exams a few years ago that anyone mentioned that I had pseudo exfoliation. My eye exams for the last 18 years have been done with state of the art equipment but even that did not detect the pseudo exfoliation. If I hadn't developed cataracts I would not have known about it until I developed glaucoma, which is a common progression. The type of glaucoma that results from pseudo exfoliation is apparently a more rapid developing and serious type and for that reason anyone with pseudo exfoliation must have quarterly or more frequent glaucoma checks with a glaucoma specialist. I am on a quarterly schedule, soon to be every few months. This is a metabolic malfunction caused by one or more DNA variants, it has no known cure, just a few treatments and unfortunately the fibrils that result don't affect just the eyes, they are found in many other organs and may contribute to many diseases and premature organ deterioration. In the past the condition was linked primarily to specific populations but with better testing that is no longer the case. While doctors are busy treating the effects of heart, liver and kidney disease they apparently don't look for the signs of pseudo exfoliation which may be the actual cause of disease. I have not so far had any treatments but am beginning to show a more intense impact and can look forward to treatment in the next few years in order to keep glaucoma from destroying my sight. Although this variant is inherited my family is long lived but does not have a history of glaucoma (one relative) or it was not diagnosed. There's a lot of information on the Internet (contradictory and incomplete) and because pseudo exfoliation affects so many organs in addition to eyes in my opinion anyone who has been diagnosed should do a lot of reading and research and be in regular contact with a glaucoma specialist who will track and treat the build up of the cells and eye pressure. I hope people who have had treatments will post what was done and the effects of the treatment.
@spinedisaster I just found this when I was curious about how long does it take to get this silent eyesight killer. Apparently 10-15 yrs. I've had yearly eye exams for about 20 yrs when I had a hard time with seeing close-up far sighted. Im going to be 70 and in 2024 im home sitting on the couch and what seemed like minutes the world went black. 0 vision. Said some words to myself and then vision blurry and my left eyelid drooped. I thought okay this is a stroke. Very bizarre event. I was going to a new eye dr and changed my appointment to an SOS emergency visit. The pressure in my left eye was way past 50, right eye was around 20. Right eye is my dominant. Well, dr told me the diagnosis and dr called his eye surgeon ASAP for further examination. My optic nerve was obliterated, gone, destroyed. Blind in my left eye. Immediate cataract surgery and 6 weeks later I'm having lazer surgery, 113 zaps. Surgeon made a wider drain to help. Next is right eye cataract surgery and made a drain in the right eye. I still find it difficult to comprehend how this was never caught. As of today I still am wearing readers 2.5 because the eye pressure is not low enough. No lazer on the right. The last surgery was week of Thanksgiving 2025. I go every 3 months. I had drops changed due to so much irritation, my eyes had 0 white, just red and serious dry eye that never stopped. Apparently again what a bizarre situation, the preservatives in the 2 different drops were causing the problem. Switch to non preservative drops and dry eye gone. I had blue eyes with a gold color rim around the eyes. That's gone and my eyes are now a gray/blue. This has been an experience I'll live with forever. My eyelid isn't that droopy so that was positive. I apologize for the long novel. I understand everything you have been through. Sending good vibes ✨️ your way.
My husband has this condition and has had many surgeries. Starting 14 years ago and intensifying in October of last year. My best advice is find the best Mayo trained group of eye specialists close enough to travel regularly. The sooner the better because when things start to go south you can’t wait for appointments.
This syndrome has always taken second fiddle to the cancers in our life, but quite suddenly our lives and schedule revolve around it. Six surgeries since October and a very intense set of events in the last week. Getting a shot of blood clot busting drug into the eye today at the clinic, then retina surgery tomorrow to try and save the eye.
All while the other cornea is de compensating and the cornea specialist is waiting in the wings to the cornea transplant to try and help the vision in the other eye.
It is heartening and fascinating, all the things they can do to the eye to save sight.
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I was diagnosed maybe 20 years ago. Until 6 months ago I was fine snd being monitored. Last year a cataract started in my right eye and it's pressure peaked to 34 with 14 in the left. I took drops which worked but at 6 months I was at 22 on my right. We decided to do SLT laser surgery. Painless, took 15 minutes and can be repeated. 6 months later my right eye was at 16. Success of a cataract surgery depend on the strength of the zonules in my eye. There are new devices, lenses and techniques to help in a successful outcome. My ophthalmologist has done an untold number of pseudoexfoliation cataracts and claims he's had no unrecoverable outcomes...yet.
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Helpful -
Hug
2 ReactionsI was diagnosed with this disorder in 2012 (left eye significant, right eye better), had 3 SLTs, cataract surgery both eyes, years of drops, a trabeculectomy in 2022. Since having the trab, I do not take drops, and iop has remained stable! Sought a second opinion at Johns Hopkins-Wilmer and surgery was recommended (by doc who had done the cataracts, known and respected by the Hopkins expert). Glad I had the trab but surgery was a bit more complicated than the cataract surgery.
There are two glaucoma research/support groups that I follow:
Glaucoma Foundation
Glaucoma Research Foundation
Happy to respond to any questions. Sally
-
Like -
Helpful -
Hug
3 Reactions@spinedisaster I just found this when I was curious about how long does it take to get this silent eyesight killer. Apparently 10-15 yrs. I've had yearly eye exams for about 20 yrs when I had a hard time with seeing close-up far sighted. Im going to be 70 and in 2024 im home sitting on the couch and what seemed like minutes the world went black. 0 vision. Said some words to myself and then vision blurry and my left eyelid drooped. I thought okay this is a stroke. Very bizarre event. I was going to a new eye dr and changed my appointment to an SOS emergency visit. The pressure in my left eye was way past 50, right eye was around 20. Right eye is my dominant. Well, dr told me the diagnosis and dr called his eye surgeon ASAP for further examination. My optic nerve was obliterated, gone, destroyed. Blind in my left eye. Immediate cataract surgery and 6 weeks later I'm having lazer surgery, 113 zaps. Surgeon made a wider drain to help. Next is right eye cataract surgery and made a drain in the right eye. I still find it difficult to comprehend how this was never caught. As of today I still am wearing readers 2.5 because the eye pressure is not low enough. No lazer on the right. The last surgery was week of Thanksgiving 2025. I go every 3 months. I had drops changed due to so much irritation, my eyes had 0 white, just red and serious dry eye that never stopped. Apparently again what a bizarre situation, the preservatives in the 2 different drops were causing the problem. Switch to non preservative drops and dry eye gone. I had blue eyes with a gold color rim around the eyes. That's gone and my eyes are now a gray/blue. This has been an experience I'll live with forever. My eyelid isn't that droopy so that was positive. I apologize for the long novel. I understand everything you have been through. Sending good vibes ✨️ your way.
-
Like -
Helpful -
Hug
1 ReactionMy husband has this condition and has had many surgeries. Starting 14 years ago and intensifying in October of last year. My best advice is find the best Mayo trained group of eye specialists close enough to travel regularly. The sooner the better because when things start to go south you can’t wait for appointments.
This syndrome has always taken second fiddle to the cancers in our life, but quite suddenly our lives and schedule revolve around it. Six surgeries since October and a very intense set of events in the last week. Getting a shot of blood clot busting drug into the eye today at the clinic, then retina surgery tomorrow to try and save the eye.
All while the other cornea is de compensating and the cornea specialist is waiting in the wings to the cornea transplant to try and help the vision in the other eye.
It is heartening and fascinating, all the things they can do to the eye to save sight.