ERM procesure in 3 days and my anxiety is building

Posted by miamicuse1960 @miamicuse1960, Apr 27 4:01am

I have a epiretinal membrane condition and am scheduled to have a vitrectomy in 3 days, and my anxiety is off the chart.

It's 4am and I can't sleep.

Originally I had a very mild ERM, my retina specialist said I have it but it's not enough to bother my eye sight but if I start to see wavy and blurry lines that may be time to discuss treatment.

I then had a cataract lens replacement. Left eye went fine, saw 20/20 the next day, but when when my right eye got operated, the vision was blurry the next day, the next week, the next month (and more blurry than pre-cataract surgery) so the cataract surgeon said there is something going on with my retina and to return to the retina specialist. The retina specialist said there is significant inflammation on my retina post cataract surgery...did eye drops, tried different eye drops over the course of several months. prednisolone, ketorolac, bromfenac, difluprednate, no improvement whatsoever, progressed to injection of Triamcinolone (3X over a six week period), no improvement, progressed to injection of Avastin (3X over 3 months), also no improvement, so advised to do a vitretomy for a "membrane peel".

Initially I wasn't very nervous because doctor said it's a common procedure and I should see improvement afterwards but could take some time, and was told no need to do the post-op face down. I was also told if I do not operate, and operate soon, I will lose my central vision.

Nonetheless, I went to see another retina specialist for a second opinion, and the second retina specialist said if every thing has been tried surgery is my only option but comes with risks. He said the inflammation that caused the irregular retina surface is what is causing my blurry vision, but this inflammation can't settle back most likely because the EPM scar tissues are keeping the inflammation from settling back, however, sometimes the inflammation may be caused by blood vessel hemorrhage so he did an angiogram of my eye to confirm I don't have any issue, but he did ask if I did an angiogram before and I said no, he commented "very interesting..." That makes me wonder my my first retina specialist didn't do one, but when I asked if he would consider operating, he said my first retina specialist is fine and he would not hesitate to have him do the operation.

So now I am having this procedure in 3 days and I can't sleep.

I asked the retina specialist to confirm there is no need to do the face down since I may have to get a special table for it right? He said no need unless there are complications.

I asked if there are medications like pain killers or drops I need post-op and he said he will tell me on the post op appointment the day after. If there is pain just take Tylenol.

Sorry for the long rant, but I do have some specific questions for those who have been through this procedure. I guess I am especially nervous because this condition came as a by product of the cataract surgery, so it has been one problem after another for me.

(1) Since the procedure involves multiple holes being open into the eye to extract the vitreous fluid and to do the membrane peel, these holes would not automatically seal up afterwards right? So once the procedure is done, a replacement fluid is added into the cavity, wouldn't the fluid leak out of the open holes? Or are the holes stitched up afterwards?
(2) This fluid that is filling the eye, is this fluid a permanent replacement? I read that it replaces the natural fluid permanently, but I also read that the eye will gradually replace it with natural fluid over time? Which is it?
(3) I was told I will have local anesthesia and will stay awake during the procedure, so if I am awake during this procedure, am I going to be conscious enough to speak to the doctor during the procedure? What if I feel an itch behind the ear that is extremely uncomfortable? What if I suddenly have an urge to sneeze or cough? I can't imagine that would be a good thing with such a precision procedure?
(4) Yesterday I had to remove a poster from the wall attached with double sided tape. I had trouble getting it off as I pulled it off the paint came with it. I immediately thought about this procedure of peeling the membrane scar tissue. What if there is no "edge" to grab the membrane to peel? What if when peeling it, the retina detaches at the same time? What if when peeling it, the optic nerves get pulled with it?
(5) My procedure is at 1PM, I was told no food or drink for 8 hours prior. That means no food after 5AM. No breakfast or lunch. Can I at least drink water after 5AM.
I will try to go back to sleep now and see what happens.

Interested in more discussions like this? Go to the Eye Conditions Support Group.

Zebra | @californiazebra | Apr 27 3:54pm

I’m sorry you have to go through this procedure and are having issues. I have ERM in one eye and hope to never get to where you’re at. You’re in my prayers for a successful procedure and peace of mind. ❤️

jimw9 | @jimw9 | Apr 28 12:38pm

You can always postpone this surgery.

brian24 | @brian24 | Apr 28 2:34pm

Hello and no problem on the long email,any eye surgery is taxing on the brain,I am sorry for your anxiety,know you are in the hands of professionals and trust them.I had an ERM removed 6 months ago at the Mayo clinic Rochester.I was mostly awake for the procedure ,which i thought strange and asked the same questions you did about sneezing etc.,so no problem there.The surgery went smotth,no face down or detached retina or bleeding and i wish the same for you,be diligent in post op instructions for eye care.3 months after my ERM i had cataract surgery and i mentioned to my Dr. that things seemed to be blurrier than before,and he said when the cataracts are removed all imperfections are magnified,i did have small stiches in the eye which dissolve over time,no need to worry there,i have flashes from those stiches but the dr.said that will fade in time.Regarding the peel of the ERM,yes it is a very delicate surgery and they inject dye into the back of the eye to enhance the membrane to grab it,if your membrane has not been on long it is easier to peel,so what i was told,that is why i had mine done.I can say there has been an improvement but not to where i can say i am totally happy with the results,i am hoping with time it will heal more.Now that i have an iol after cataract surgery i wonder can i still see improvement in the eye thru the lens if the retina is still healing,i pray for you and great results,breathe and relax you will do fine,Blessings Brian from Canada!Ps i wore my eye patch at night for an extra 2 weeks afterwards just to be careful of rubbing or poking the eye at night.

miamicuse1960 | @miamicuse1960 | Apr 29 12:44am

In reply to @californiazebra "I’m sorry you have to go through this procedure and are having issues. I have ERM..." + (show)

@californiazebra thank you, my original ERM was very mild, in that I didn't even know I had that condition until the retina specialist told me I have it but said no need to take action unless/until my vision is affected by it, and right after my cataract replacement surgery the vision got very blurry and if I am looking at a window with vertical blinds, the vertical blinds look wavy in the middle, so I guess until you are seeing some blurry/distorted visual effects, there is no need to take any action, and I hope you stay this way and no need for any procedure.

miamicuse1960 | @miamicuse1960 | Apr 29 12:47am

In reply to @jimw9 "You can always postpone this surgery." + (show)

@jimw9 I suppose I could, I was told in January 2026 that I should operate, after a prolong series of treatment involving eye drops and injections. I waited and waited and finally the surgeon said if I do not operate, I am at risk of losing my central vision because the OCT scans show a progressively worsening condition. So I decided to give it a go.

miamicuse1960 | @miamicuse1960 | Apr 29 1:26am

In reply to @brian24 "Hello and no problem on the long email,any eye surgery is taxing on the brain,I am..." + (show)

@brian24 thank you so much for the detailed reply. I am hoping my experience would be similar to yours, although I have been having this issue for almost a year so no idea if this is long enough to make it more challenging. I was told I do not need to face down unless there are complications, which I assume it means when doing the peeling the retina detaches with it then all bets are off. I wonder if that happens if they would also do the retina reattachment at the same time, hopefully that won't happen. I just can't keep thinking about what could go wrong.
I think they need to open up two ports in the eye to insert the equipment for the operation, or may be more I don't know so those openings are what were stitched up? Good that is self dissolving, can't imagine having to manually remove the stitches once healed but I read that happened to someone.
I was told no lifting any weight, no straining and no bending over for a while. May I ask how long was it for you before you can say pick up a watermelon at the supermarket, or twist open a jar of pickles or dig a hole with a shovel in the garden to plant something? Weeks or months?

brian24 | @brian24 | Apr 29 8:16am

In reply to @miamicuse1960 "@brian24 thank you so much for the detailed reply. I am hoping my experience would be..." + (show)

@miamicuse1960 You are welcome,i do not know your name,but i see 1960 at the end of your handle,i was born in 1960 by the way haha,once again i would not wait to operate,as they say the longer the ERM is on the more pulling it does to the retina,i am so sorry for the both of us and anyone who has this awful condition,please do not think the worst about the operation and pray and pray for no detachments and think positive only,no negative waves please!The stiches were no problem at all,they give you eye drops to help with all that.You are right about the heavy lifting,i waited 3 months till i started my workout routine and i was fine,bend your knees as far as you can to lift anything and let your legs do all the work,breathe out or exhale when lifting anything to avoid pressure in the eye,but my Dr. said exercise is great for the eyes ,especially bike riding,as it pushes more blood to the small eye veins,but everything in moderation when starting to recover.Just to let you know i had bad horizontal lines before the surgery,and after the operation i had 6 or 7 floaters that looked like crows but they went away after a month and now the vertical lines are wavy,strange,the horizontal lines are not as wavy,i guess everyone is different,So you are very welcome for the info,God Bless and let us know how your surgery goes,Brian!

miamicuse1960 | @miamicuse1960 | Apr 29 11:50am

It is now 24 hours before the procedure, and I am spinning my head on preparations.
(1) Trying to decide what clothes to wear, thinking the most comfortable would be tee shirts and shorts, but was concerned that after the surgery it may be difficult to change with clothes that requires removal over the neck & head may disturb the eye, so may be something button down would be better even though not as comfy?
(2) Probably sneakers that I normally wear would be bad if I have to put them on by bending over, so something loose like crocs?
(3) Surgical center says no food or drink after midnight tonight, but my procedure is at 1pm tomorrow, so that would be 13 hours without food and water. Not too worried about food, but no water for 13 hours may get dehydrated. Spoke to the surgical coordinator and she said may be no food and water 8 hours prior, so that means nothing after 5AM tomorrow morning. I wonder if I should drink two big glasses of water at 5AM, is that defeating the purpose of fasting or just a small sip of water.

brian24 | @brian24 | Apr 30 8:09pm

In reply to @miamicuse1960 "It is now 24 hours before the procedure, and I am spinning my head on preparations...." + (show)

@miamicuse1960 Good luck with your surgery,you will do fine,button down shirt,crocs and enough water to keep you hydrated,you answered all your questions correctly,it will go fast and i pray for great results,Will be thinking of you,Brian!

miamicuse1960 | @miamicuse1960 | May 1 11:31am

In reply to @brian24 "@miamicuse1960 Good luck with your surgery,you will do fine,button down shirt,crocs and enough water to keep..." + (show)

@brian24 Thank you so much! I survived the procedure, it was not as bad as I imagined, the procedure I think was less than 20 minutes and I was out. Surgeon said it went well, I have a cup taped over my eye, no pain, a little soreness, and when I move my eyelid it feels a little like sand got in my eye. I have a post-op appointment today to follow up.