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Looking for information from anyone who has this and is being/has been treated for it
Hello @spinedisaster and welcome to Mayo Connect.
As I was not familiar with this disorder I did a little internet search on Google Scholar and found this article,
Here is another article, https://www.aao.org/eyenet/article/diagnosis-management-of-pseudoexfoliation-glaucoma
@spinedisaster While we are waiting for others in the Connect community to respond, could you share with us a little of your experience with this diagnosis and what type of treatment has been suggested? Is this a disorder for which you have recently been diagnosed?
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.
Jump to this post
references that will come up in a Google search:
Genetics and Genomics of Pseudoexfoliation Syndrome/Glaucoma
Ophthalmologists explore causes, consequences of pseudoexfoliation syndrome
Ocular Surgery News U.S. Edition, June 25, 2016
@spinedisaster I applaud you for the great research you have done and knowledge of this problem. You are definitely a good advocate for yourself. I'm sorry that no one has posted about this yet. As this is a rare condition we may not have any members who have experience with this. I hope that someone will post soon.
Hello @spinedisaster, While we wait to see if other members are able to share their experience with you I found a couple of associated articles that provide some information if you have not already seen them. I also applaud you for doing diligent research to find something that will help. Has your eye doctor offered any suggestions?
Monitoring and management of the patient with pseudoexfoliation syndrome: current perspectives (March 2019)
Pseudoexfoliation (PXE) Syndrome and Pseudoexfoliation Glaucoma (March 2017)
The Art of Managing PXF Glaucoma (April 2012)
John, thank you for these references. I read everything I can find. One thing I haven't asked my glaucoma specialist is how many patients he has or has had with this condition, because until recently my symptoms weren't that intense or changing quickly and my concern level was low. That recently changed and I'm now being closely monitored for the effects of glaucoma. There's apparently not a lot of choice of treatments but with ongoing research that can change. But because this is a genetic condition no matter what treatment is used the cells will keep being produced. My doctor has mentioning vacuuming or laser blasting, and treating increasing eye pressure. He hasn't mentioned how effective that is and that is why I hope someone responds who has had treatment and can tell me what the results are.
I am going through basically the same experience,.. I was just recently told that I might need to have the surgery which came as a complete surprise since I have been told as long as my pressure stays low, I am doing as best as can be,..considering that my Gluacoma is severe. Now I am told I have pseudoexfoliation glaucoma and cataract concern,..so, confused. Going back in 2 months to see if my condition is the same or getting worse,..therefore the possible need for surgery with the new diagnosis.
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