Proliferative Vitreoretinopathy

Hi @jiahuey. Welcome to Connect. I did a quick Google search and it does look like this is a topic that is being researched a lot. Here is an article from Medscape (http://www.medscape.com/viewarticle/856771_4) and here is one from the NIH (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3429288/) which you might find interesting. I'm also tagging @bonitav, @angel18, @connieg, @healthy2012 and @khall who have posted about retinal detachments in the past and may have some insight. Hope this helps!

Waw thank you @kelseydm for your quick reply! wondering if i could find out about the latest clinical trials and the results for this condition? btw your articles are indeed helpful:)

I mean it would be great to know if those new drugs being researched for PVR are currently available in the US already?

Hi @jiahuey, I would suggest taking a look on the National Health Institute's clinical trials website https://clinicaltrials.gov/

Hi @aliskahan, ok thank you!!

I have PVR and just had surgery membrane peeling (removing g scarring tissue) a sclerle buckle and I had oil out in. The outcome was not positive and they had to remove some of my retina because of scarring tissue. My vision prognosis is poor however in two weeks they want to do a methotrexate injection to help stop the scarring tissue from growing and pulling the last bit of my retina. They say this methotrexate injection is fairly new but there is nothing else out there. If anyone has other information please share. It’s hard to believe it all started with floaters in my right eye in late December 2024 a diagnosed retinal tear, lazik then vitreal hemmorage followed by surgery another detachement and tear. During recovery I had a another retinal detachment with macula off and now I have no vision in my right eye. Wow! PVR is serious and from what I understand nothing I could have done to prevent it.

@sjm54321

Hello there. My name is Hannah Burks. I feel really grateful to have found your response, as my Dad, Aaron, has been battling PVR for over the past year. His retina spontaneously detached after seeing floaters in his vision in early May of 2025.

Since then, I cannot even tell you how many surgeries my Dad has undergone. The first surgery was unsuccessful, and his retina detached again. We then went back, and Aaron ended up getting a buckle. The next few surgeries have proven unsuccessful. Dad's most recent surgery was to remove scar tissue and put in long-term oil. He has very little vision at all out of his left (affected) eye, and isn't ever expected to regain much more (if anything). He is virtually blind in his left eye, and his vision is VERY warped/distorted.

Our current issue: the vitreous fluid in his right eye (good eye) is separating from his eye. Aaron has very sticky vitreous fluid. There is a 1/5 chance that the fluid will pull off/detach his retina in his right (good eye). Aaron is currently going to see a doctor every two weeks to monitor both eyes. On occasion, he receives methotrexate injections in his left eye to prevent scarring. It seems to work; however, it does not help his vision and is very painful.

Honestly, my family is just doing everything we can to help my Dad- support him, find out if there's anything at all that can be done, and continue to research PVR and try and connect with others who have been through this unique disease. If you have any comments or any knowledge at all to offer, we would be extremely grateful. Honestly, we are practically begging for ideas or advice to be thrown at us, even if it is something we already may know or have tried.

Thank you so much, and I hope your PVR journey has seen some sunshine. Here for you!

Commenting our story on the chain:

Hello there. My Dad, Aaron, has been battling PVR for over the past year. His retina spontaneously detached after seeing floaters in his vision in early May of 2025.

Since then, I cannot even tell you how many surgeries my Aaron has undergone. The first surgery was unsuccessful, and his retina detached again. We then went back, and Aaron ended up getting a buckle. The next few surgeries have proven unsuccessful. Aaron's most recent surgery was to remove scar tissue and put in long-term oil. He has very little vision at all out of his left (affected) eye, and isn't ever expected to regain much more (if anything). He is virtually blind in his left eye, and his vision is VERY warped/distorted.

Our current issue: the vitreous fluid in his right eye (good eye) is separating from his eye. Aaron has very sticky vitreous fluid. There is a 1/5 chance that the fluid will pull off/detach his retina in his right (good eye). Aaron is currently going to see a doctor every two weeks to monitor both eyes. On occasion, he receives methotrexate injections in his left eye to prevent scarring. It seems to work; however, it does not help his vision and is very painful.

Honestly, my family is just doing everything we can to help my Dad- support him, find out if there's anything at all that can be done, and continue to research PVR and try and connect with others who have been through this unique disease. If you have any comments or any knowledge at all to offer, we would be extremely grateful. Honestly, we are practically begging for ideas or advice to be thrown at us, even if it is something we already may know or have tried. Thank you.

We are hoping to try and find a doctor that will see Aaron that specializes in this exact disease, even if it means flying across the US.

@hannahburks I totally understand what your dad has experienced. I too lost my vision in 1 of my eyes after repetitive detachments in that eye. If there was one decision that I could have made differently at the time, it would have been to find another very skilled retina specialist after 3 failed retina reattachments. I also have an oil tamponade in the back of my eye. Unfortunately for me, I was led to believe that the oil tamponade would be removed once it was secured that the retina remains attached and that my vision will likely significantly improve after the eventual removal of the tamponade. After this lengthy process of about 2 years, I continued to inquire about when he was planning to remove the tamponade and was then told that was not the plan as they now concluded that the retina has remained attached because of the tamponade and my lost vision, blindness in that eye, was now my new existence. This was over 7 years ago and it has not been easy. Your father is fortunate to have people that are helping him- you and other family members, I suppose.

Getting back to the ordeals I experienced, after the 4th reattachment surgery, I had an appointment with another ophthalmologist- for another ocular condition. During that appointment he questioned me as to why I am continuing to use that surgeon as he has proven to fail me so many times. This alternative had not occurred to me because as a patient, we often put a tremendous amount of trust and confidence on our doctors. He provided me a referral of a great retina surgeon and specialist. This subsequent specialist assured me that had I used him, I would not have lost my vision as the previous surgeon continued to repeat the same surgeries. The 2nd surgeon informed me that there is a number of options to use to reattach the retina and if he tried one method and that didn’t work, he would have used another method. He is in the NY area. Best of luck.