I would like to add a post to share my ERM story and to make use of the opportunity to thank so many posters who have inspired me while I was seeking for help to understand what it is and to look for a good surgeon to operate on me. The biggest thanks definitely goes to Jodie who has pointed me to the surgeon I could confide in, Dr. Steve Charles. During my 2 year monitoring period and my search for a good surgeon, I have seen at least 10 ophthalmologists and around 5 could operate on me. I did not have enough confidence until I met Dr. Charles. I think the one most important decision to make regarding such a delicate surgery (vitrectomy + membrane peeling) is who you choose to operate on you.
Without further ado, let me start with some timeline and data. I was diagnosed for idiopathic ERM in May 2010 at the age of 45 in my left eye with BCVA dropped to 0.6. My right eye was at BCVA of 1.2. Both eyes had their vitreous completely pulled back by then. In fact, I actually caught their pulling back about six months prior when I discovered a sudden increase of floaters and went immediately for an eye exam and was told to actively monitor and to watch out for detachment. However, I was a bit confused with my situation back then since I have also developed presbyopia on my highly myopic eyes (both -9.75D) at the same time.
Since then, I have seen many different ophthalmologists seeking for their opinions. One thing I noticed is that their opinions do vary widely, from absolutely not a good idea to operate (as it is dangerous and could cause many problems later on) to doing it as soon as possible (the chance and level of recovery is higher). One of them injected Lucentis in my eye saying it could help to reduce the swelling but it was refuted by others. Sometimes they even contradict themselves from one visit to another. I have learned to keep a log of what they told me in each visit and have also started looking up the web for information. One of the surgeons I visited has long been using ICG to stain the translucent membrane for better viewing and removal. However, there have been numerous research papers highlighting its photo-toxicity although the side-effects may only show up at least a year later, thus late for patients to blame for correlation. In any case, I learned that on the surface, all the surgeons seem to do the same operation, but they could all be doing it differently. I have learned that the angle to put in the gauge, the size of the gauge, the angle and the force applied to peel the membrane, the duration for the application of the steroid, all these matter. This is also how a good surgeon can make a big difference to the outcome. As always, the evil is in the details.
I was operated by Dr. Charles in July 2012 under twilight sedation. It went smooth without any trauma. The next day when I went to his office to remove the patch from the operated eye, my vision dropped to probably only the first big letter on the eye chart but was told it was normal. There was also significant loss in light sensitivity. I was told that the entire recovery process for the nerve cells to mechanically realign could take as much as 18 months. I went for a follow-up in his office in two weeks and was shown the new OCT image of the left eye. While it was still thick in the retinal thickness, the edge was completely smooth and no longer corrugated. I was also told to stop the antibiotics and steroid I had been using as there was no inflammation.
Since then, I went home to Hong Kong and have been following up with ophthalmologists here. Readings in 2 months and 5 months are as follows:
• BCVA from 0.6 to 0.8 (pre-surgery at 0.6)
• Myopia from -9.75D to -10.25D (pre-surgery at -9.75D)
• Central retinal thickness from 390 micro-m to 377 micro-m (pre-surgery at 407 micro-m)
Light sensitivity has shown improvement as shown on visual field tests although it is certainly not as good as my right eye. I tested myself using a contrast sensitivity test I found on the web and there is a difference of 2 levels (13 in the right vs 11 in the left).
For the sudden increase in myopia, I have been told it is an early sign of nuclear sclerotic cataract. Although the thickness of the retina has not been coming down quickly, I have been reminded once again by Dr. Charles not to have it be treated as edema (no leakage found) and should wait for the bio-repair process called plasticity to take place.
I will keep you all posted on my progress.
Thank you Dr. O. Yes, I am actually not too worried as long as it is on the recovery trend. I am aware that some people can have 20/20 vision while the retina never returned to its normal thickness. I am only hoping that the more it gets closer to the original pit shape, the higher chance I have better contrast and less distortion. Besides the less than perfect VA, I still have some distortion and a slightly bigger image in my affected eye, which I have not been able to identify the exact physiological cause for them.
So great of you to share the details of your journey Paty ! I went thru a similar scenario, but had my ERM/Vitrectomy with a retina Specialist locally. I too went to many specialists before my surgery decision and found a huge difference in the details of how they performed the surgery. Mind you, I had to pull these details out of them as none volunteered that type of info at the consultations.
The ICG dye was also a concern of mine after what I read, but most surgeons used it and didn't want to even discuss the pros and cons of it. I found one surgeon that used Kenalog dust to help visualize the membrane for peeling. I believe that is what Dr. Charles uses also ? Did he happen to tell you ?
Anyways, I am 19 months post ERM surgery, 8months post cataract surgery and my retina central thickening is still 380 ish (but no edema). Monitoring it with periodic OCT tests, but it seems to have leveled out at that thickness. My eye test shows 20/40 but that is with me "scanning" with the surgery eye. I still have a remaining blank spot to the right of center.
Back to you...you mentioned some distortion and I believe that might be from the disorganization of your photoreceptor layer from either the membrane tugging at it prior to surgery, the surgery itself tugging at the retina, or the swelling of the retina.
In my case, the OCT results show the IS/OS junction layer in my macular region, interrupted...that is , not connected. From extensive reading the IS/OS junction is critical for good vision so unless it re-connects with time, then this is the vision I am left with. I too have a little distortion and the image size is about 20% larger than my good eye, but my good eye seems to override that image when using both eyes together.
Anyways, I share these details because like you, I was hungry for details from previous ERM patients when I was in my research phase. It is nice to hear other's experiences to know mine wasn't abnormal.
BTW, I too caught doctors contradicting themselves from visit to visit...which didn't give me much confidence in them.
My cataract formed within a few months post ERM surgery, but my good eye only has a trace of cataract so I am leaving it alone for now. FIND A GOOD CATARACT SP. that does a lot of surgeries on previous retina surgery patients. Cat. surgery post retina surgery is riskier and takes more experience. I went to 6 Cat. sp. before I found one who told me the difference in surgery techniques for patients like us...they "lower the bottle" when cleaning out the cataract so as not to put too much pressure on the capsular sac holding your lens. The zonules holding the capsular sac are likely weakened from your ERM/Vitrectomy so has a higher risk of damage.
I don't want to go on and on here, but like I said, I appreciated Jodie's experiences before I made my decision too...so hoping this is helping someone out there.
Thank you Luvtoski. I have read many of your posts before my surgery. I bet you must have been reading my post with big familiarity! I am indebted to so many in the forum for the wealth of information and for the personal experience they are willing to share with fellow patients. After all, I have yet to find another person in my social circle to have gotten an ERM!
I chuckled when you mentioned about pulling out information from the specialists. For the one I said who used ICG, I actually found that out by reading his many papers written. When I asked him about it, he said he had stopped using it for a few years as he has gotten a better alternative (Brilliant Blue G) although he still considers ICG safe as long as one controls the concentration and exposure time. My response to that was -- calling up his nurse to cancel my next appointment with him! In fact, I would have cancelled it anyway since he told me he would put me in general anesthesia, hospitalized for 2 days, do an IOL transplant for the affected eye (since I would catch cataract anyway), and possibly another IOL transplant for the unaffected eye (in order to gain refractive balance).
Dr. Charles also used Brilliant Blue G to stain the ERM and the ILM in the 25 guage pars plana. He didn’t use any Kenalog dust (I went back to read his operation report and the hospital’s itemized charge sheet to make sure). I thought Kenalog is a steroid to reduce inflammation but you mentioned this is for visualization of the membrane? In Hong Kong, I did hear a surgeon who told me he would normally put a thin layer of steroid powder on the retina at the end of the surgery so as to reduce edema but its side effect would be glaucoma.
What was your BCVA pre-surgery? I didn’t have a very bad eye to start with and my other eye completely filtered out the bad image. However, while my good eye helped in the VA (as one basically focuses using the fovea centalis which has the highest concentration of cones), my perspective to tell distance was not great and I remember I had to really watch out with the stairs. Over time, the ERM I had progressed and pulled tighter toward the center thus it quickened my decision to have it operated. For the distortion, I remember the first day after the surgery (you know, when I was only seeing the biggest “E” on the eye chart!) I could already tell it was better since I saw almost completely straight lines on the Amsler grid, though some patches of grid lines were dimmer than others. Today, situation has improved from then but some distortion still remains. Let’s see how much more it can recover!
Thanks for your info on the integrity of the IS/OS junction and its correlation with the final VA. I was not aware of it. I went back to check my OCT image and that area looks intact so hopefully there is still room for improvement. It is funny what Dr. Charles told me about (1) the fovea pit will return (2) I will get back 20/20 vision (3) I will have very little chance of getting cataract (as I am under 50). Let’s see how many of these will realize! In fact, on (3), when he found out I was 47, he changed it from no chance to little chance. I can only blame it on deceiving Asian looks!
Thanks also for reminding me on finding a good surgeon for the cataract. I have already started my research on it and found out the higher chance of capsular rupture after vitrectomy. Dr. Charles suggested one surgeon in the US and another in Hong Kong for me. The one in Hong Kong is actually the specialist I am regularly seeing and I may use him this time. We already discussed about the lower pressure needed. From what I read, it looks like they may also need to change some techniques on the way they fragment it. There was also a suggestion I read that the cataract surgeon should be ready to do a vitrectomy if needed. BTW, did you use the femtosecond laser machine? Acrysof lens? I will have to start thinking about the target I want to achieve before my next visit to the ophthalmologist…
Hello again Paty...My vision entire life was 20/20 then presbyopia set in at around 50 (am now 58). It is still a mystery to me why the ERM developed and I went a couple months with the sudden blur from it thinking it was due to eye makeup reaction. Anyways, when I finally went in to Optometrist I was at 20/200 and could only see big E. All 4 Retina sp. I saw said it would not resolve on it's own without surgery and my only chance for improvement in vision was ERM peel/Vitrectomy.
I had that done and saw gradual improvement, but still have retinal swelling, of which we are just leaving alone since it is not getting worse.
Cataract information: It developed within 3 months post ERM surgery and I could see well up to 12 inches from my eye (called "second sight", sign of cataract). Went to 6 Cataract Specialists and finally felt confident with the 6th. He did more testing to see what lens was best and actually discussed my target and reasonings for it. I went with Tecnis monofocal lens in my surgery eye only. I read that there was a .25 margin of error with Doctors target in either direction, so thought if I targeted Plano (o) I could potentially end up +.25, of which I didn't want and Dr. suggested not to get.
Hence of my test results target choices I chose a -.60 and figured "worse case scenario in either direction I could live with.
I ended up almost exactly -.60, which is a little near sighted...but my good eye still sees distance pretty well so I have a version of Mini-monovision and like it just fine. I can see the most clearly with surgery eye alone at about 2feet to 8 feet. Still have the blank spot in my surgery eye to the right of center, and I believe that is from my IS/OS photoreceptor junction being interrupted.
Doctor never really gave me an answer but said I should just be happy with the good improvement.
Did not use the femtosecond laser machine as the Dr. I liked didn't use it.
Good luck and keep us posted, I love that you are into the research end of this !!!
Hi Lutovksi, I took some time to think about your situation related to mine. First, I think I never quite had the honeymoon period of the second sight as my presbyopia for the post-vitrectomy eye remains about same while a higher myopia was induced! Also, I think I have a slightly more complex situation than yours as I am also high myopic and wear contact lenses on both eyes normally outside of the house and eyeglasses when inside, and yet another pair (less minus on the prescription) to help me in reading. In my situation, I would definitely try to use the IOL to correct to close to plano since it is more important for driving and I cannot depend on that eye for reading anyway. I gathered if I still wear contact lens on my good eye, I would expect that its image size would not be too different for it to fuse with the one after the cataract surgery, although the two eyes would have over 9.0D difference. However, I could imagine (or rather, hard to imagine!) I would run into problem when I start wearing eyeglasses as the two images may not fuse. I wonder how bad that could become when I use eyeglasses for reading. I am guessing at that time the most comfortable way for me to read could be to wear my contact lenses and my presbyopic eyeglasses together. I also don't know whether I would have worse presbyopia after cataract surgery. I am guessing I would as the lens flexibility would be gone completely. Did you see that in your case? Also, did you need to do a YAG?
No, actually I don't notice any presbyopia in my cataract eye, like you said ---because it doesn't flex.
Also, I have NOT needed a YAG yet on the one cataract eye and it's been close to a year post surgery. Think I fell into the percentage of cataract patients that might not need the YAG...which is great. The less I mess with this eye the better .
Thanks Luvtoski. Great that you don't need the YAG and hope you never need one!
I think I am a bit confused now as you mentioned you had presbyopia before the surgery while after the cataract surgery, the best closest distance you got is 2ft. Isn't that presbyopia or is it actually hyperopia? I don't have hyperopia so am not aware of how someone can tell one from the other. In any case, it's good to hear that your cataract surgery didn't make the presbyopia worse.
Hi Paty !From my understanding, Myopia is nearsighted (focusing best at closer distances) and hyperopia is far sighted (focusing best at further distances).
Presbyopia is the eyes aging process that starts reducing the ability of the lens to flex and re-adjust to focus on close objects. (google to confirm my definition please). Hence, people in their mid 40's needing reading glasses for menus and things they never needed glasses for before.
It gets progressively worse with age, thereby needing stronger reading glasses with time.
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