How to slow down ERM progress?

The only thing you can do is have surgery for removal. I had it. It is painless. It sounds terrible, but is not. There are some risks with it. Your retinal will never be perfectly smooth, it will retain some wrinkle that will affect your vision. You should get gradual improvement.

The risks are detached or torn retina which can be fixed on site, infection (low probability). I had something even weirder so strange it is not even in the literature as a risk factor. I had cataract surgery first, followed by ERM removal. That was 2 years ago. My vision went from 20/50 to 20/150. The IOL is wrong for my eye, I developed persistent CME and now I have steroid induced glaucoma. I went off all meds to preserve the optic nerve, but the sight in that eye is awful. This is NOT the usual experience. I also canceled cataract surgery for the other eye. DONE WITH DOCTORS.

Sounds similar to my problem. What state did you have your surgery done in?

@margieb58 I guess your doctor is like mine, saying that there is nothing that can be done.

There is an article called "Why surgeons are peeling fewer ERMs". Being a new member, I'm not allowed to post links here.

This is the section that interests me:

[begin quote]
At first glance, Dr. Shakoor doesn’t like accepting the label of idiopathic ERM, as common as it may be. He approaches ERM patients with what he considers a healthy degree of skepticism, seeking answers to questions.

“You’ll find that a lot of these patients actually do have an underlying process,” he says. “You want to look specifically for inflammatory or vascular disease. Specifically, I want to find out if the patient has uveitis or retinal vasculitis. Does he or she have a history of endophthalmitis? I want to know if a vein occlusion is involved. How about microvascular disease? Does the patient have diabetes? Those are the issues you should explore.

“If there’s an active disease process going on, including uveitis, then it should be controlled before a decision is made on whether to do a surgical procedure such as an ERM peel,” he says.

Failing to identify another active process will increase the chance of ERM recurrence or a recurrence of inflammation that leads to other structural damage, he points out. “If you have a patient who has any inflammation, bringing that inflammation under control before surgery is very important,” he adds. “You don’t want to operate on eyes affected by an inflammatory process.”
[End quote]

Although it mainly talks about preventing a recurring ERM, I guess the same concept can be applied to stop or slow down the progression of ERM. It seems that most retinal specialists are not concerned of the underlying condition. Why not?

@bostonfern
A lot depends on IF the ERM is affecting vision. If not or only a little, then leave it alone. I had a macular pucker caused by my ERM, so I had vision issues. My vision was deteriorating as the ERM grew thicker. I could see the thickness change and the macula disappear.

@margieb58 I'm very sorry about your vision problem. Having vision problem is nerve-wrecking. I hope you find ways to release whatever negative feelings you might have.

I understant that , for some people, ERM may not lead to anything, but, for some other people, it has serious consequence.

I am still mystified about why retinal specialists keep on telling patients that nothing help ERM. I couldn't find any source of literature that says such. It's a strong statement full of consequences.

On the other hand, I doubt they would tell people not to control the systemic illness. Do you have high blood pressure, high blood sugar or high cholestrol? Are you prone to inflammation? Do you have dry eyes? It is always a good thing to control them, which may or may not help ERM.

I'm doing as much research as I can to find out the likely source of inflammation of my body. Today I learned that extremely high HDL can make the body prone to inflammation, so I need to do something about it.

@annebw
Ohio. Experienced doctors with good reputations.

@bostonfern
I went to Bascom Palmer thinking they would be able to help and was quickly dismissed with an "I can't help you," statement from the doctor who never looked at my history. He took a quick look at his imaging and said that the surgery hadn't done anything and the EMR was growing back....He can't know it was growing back or hadn't done any improvement without seeing my previous imaging. My retina doctor here did imaging after that and said there is no growing back and he should have looked at your history which we sent.

I have tried looking up stuff online and I have a medical lab background so I can read technical stuff somewhat decently. I haven't found anything helpful. This isn't supposed to happen is about the only thing I have read.

The most likely cause of the ERM was a posterior vitreous detachment in 2019. The ERM was discovered in 2020 when I noticed vision changes. I am a big chicken when it comes to surgery (maybe because my only other surgical procedure was a tonsillectomy as a kid when I woke up puking blood for the next six hours?) and I put it off until my vision was 20/50 in 2024. Some say this trouble is because I have an autoimmune disease called Sjogrens. It's pretty well controlled by Plaquenel. My BP is borderline elevated, but kept under perfect control with losartan. I asked my rheumatologist if there would be any issues with cataract surgery and she said no. My cholesterol and HDL isn't a big issue. I think it is high normal or maybe slightly elevated. No family history of anything like this, but I have a bunch of weird stuff no one else in the family has. My ophthalmologist who did the cataract surgery had been my doctor for the past 15 years. He does a ton of cataract surgeries and is well liked with great results. His biggest concern was dry eye. Instead, I had corneal edema for two weeks and after it resolved, I could tell there was more wrong. He made the statement "You really are very sensitive" and seemed a little hesitant to do anything else. Later I found out that the IOL ended up leaving me 2.25 diopters nearsighted. I had previously been .75 diopters nearsighted. The retina surgeon had no trouble with the surgery and was pleased with the outcome. As long as I was on steroids, I made decent progress on better vision and got to 20/40 with glasses. But they couldn't wean me off the steroids without the return of inflammation.

I had gone through all the ingredients in all the eyedrops looking for anything that had caused previous issues. I timed the surgery to avoid the dry heat of winter and seasonal allergies. I did everything I could to make it a success and it all still blew up in my face. It was one problem after another. If I sound upset, I am.

ALl the eyedrops for glaucoma left the conjunctiva inflamed and sore. After 2 months of no medicated eye drops, most of that inflammation is finally gone. I still have to use Refresh PF for dry eyes due to Sjogrens.

Maybe in a few months or years I will see if Ohio State has anything. My eye doctor here can't do anything unless we get the pressure controlled. It was as high as 60 at one point. Very dangerous.

Current thinking on ERM's. Doctors think that EMR's are often caused by PVD's (Posterior vitreous detachment) because there are strands connecting the vitreous with the retina and those pull on the retina when the vitreous detaches. The retina forms scar tissue from clear glia nerve tissue cells in response to the pulling. The retina can also tear or detach during this process. PVD's are thought to be a result of the aging process and usually only occur in persons over 50, more commonly in persons over 70. ERMs that don't cause vision issues are not uncommon in this age group and do not need medical intervention.

@margieb58 Thank you for sharing your knowledge and experience. It sounds like you have gone through a lot. You didn't sound upset, but you have every right to be upset.

I have a practice of going out to the nature to sing about my bad feelings for more than 1 year. It not only heals my past traumas, regulate my emotion, and now the mother nature has never been so brilliantly beautiful in my eyes.

I know some doctors are willing to think about difficult/different cases, and some doctors just want to play by the book. Sometimes patients get together and share what they learn from their doctors, and they start to think like a doctor. I regret that I listened to my doctor's discouraging "Nothing helps", and didn't do anything about my cholesterol.