I think you're placing way too much importance on central macular thickness measurements. Your current number sounds all right to me. This is all well beyond my limited knowledge--but I suspect that something else has been causing your declining acuity.
A university setting sounds like a fine place to get a second opinion. Set up an appointment with a senior staff member who specializes in vitreo-retinal surgery. Don't assume that s/he won't take an interest in your case. I'll bet my next paycheck that s/he will. You absolutely do not need to be on your own. Let us know when you've scheduled the appointment.
Thank you again for your follow up Jodie, you are a very special person to spend this much time helping perfect strangers. Just know we appreciate your every word.
I am going to get on this "finding another retina specialist" for a second opinion. Just trying to think outside of the box where perhaps someone other than just a practicing Retina Surgeon might take an interest in my situation.
We have a University here, so perhaps I'll start making some calls to them ?
Any ideas ?
Maybe someone could help read my pre and post surgery OCT's to help break down what is going on.
I did send them to Dr. Charles via e-mail a few months ago post surgery...he said some things like "he has never seen after surgery results like mine", and that the unusual extended surgical light time probably caused the phototoxicity of the photoreceptors. Then, he asked who the surgeon was and once I told him it was someone that he trained, he suddenly didn't have anymore time and did a complete 180. Hence, I feel it wouldn't be worth pursuing him.
Feeling like I am just on my own here, but I won't give up.
Also wondering if perhaps the OCT manufacturers might have someone willing to help interpret my OCT 's ? Just a thought.
Thanks again !!!!!
I'm so sorry that you ended up in your present situation. My first thought is that you should send your medical records to Memphis and then go see Dr. Charles. He's certainly not a member of any good ol' boys network. You wouldn't believe what he told me about the retinal specialists I'd seen in Chicago (a few of whom were allegedly his "friends.")
But if you want to stay local, I'm certain that you can find a doctor who will give you straight answers (which you're obviously not getting from your current doc.) Please, please, please--don't delay in setting up a consultation for a second opinion. Something isn't right with your eye, and there may be a treatment that could reverse the decline you've been experiencing. Don't waste time.
Hi Pinhole and Jodie...
Thank you for your concern ! This mystery is frustrating to say the least.
I did call my surgeon yesterday and he said simply that I was too "nervous" and had to just give my eye more healing time. I asked specifically if he thought the ELM layer and IS/OS junction (critical photoreceptor layer for Visual acuity) might recover and reconnect and he said "there are no studies to show either way".
I then asked if in the thousands of surgeries he has done whether there were others that had a thick ERM like me, as well as this IS/OS junction interruption that may or may not have been there pre-surgery (OCT pre-surgery has shadows so it's hard to see for certain) and then whether any of those patients had their IS/OS junctions recover...and he said it "can" happen, but he didn't know and had no way to predict if mine would.
I asked again why the huge decline in vision post surgery within 3 months from 20/60 to 20/400 and he said he would attribute it to the newly forming 2+ cataract, as well as remaining swelling. He said the swelling can do something like keeping the photoreceptor layer from getting rid of its waste products? I wasn't sure what he was referring to, but it sounds like he is trying to blame the missing photoreceptors on my remaining retina thickness 4 months post surgery of 385. (went down from 455 one month post surgery, so is still improving)
From what I've read, my conclusion is that they were destroyed during surgery from overmanipulation when tugging on the ILM layer and/or the extended 15 min. the surgery light was left in one spot inside my eye during the laser machine breakdown in the middle of surgery.
If you think this sounds like a "mess", well I have to agree. I tried to take my mind off of everything for the 3 months between appointments, but this huge decline spurred me into more research. I just want a clear understanding of what is going on here. I am hunting for another Retina Surgeon for another opinion, but am finding out there is a "good ol' boys" network with these guys and I'm afraid that I won't get an honest opinion.
It would be wonderful if I could find someone who would actually take an interest in this odd case and give me some straight answers.
I'll keep trying for sure. If nothing else I hope that my experiences will help someone else on this forum.
If anyone has any suggestions, bring them on please !!! ;-)
Keeping a good attitude though no matter what.
Yes, yes, yes--get another opinion! The "answers" you're receiving from your surgeon make NO sense to me. Something more is going on. Please see a different retinal specialist.
Dear Homecrafter,
I am concerned about your eye situation, and about the scant explanations you have received. Would it be possible for you to obtain a second opinion?
Like you, I had a vitrectomy/ERM peel this year. I am just so very sorry that your vision has been declining and that you have not received satisfactory answers.
I was going to weigh in on your earlier emails about choosing an IOL until I saw your post today.
Might it be possible for you to arrange a longer appointment with the surgeon to get your questions answered? Are you still being treated with eye drops? I really hope you will pursue a second opinion, especially with your gut feeling that something else may be going on.
Best wishes.
Soooo nice to hear from you again Jodie...yes, this is all a mystery to me also and am getting "short, non-specific" answers from the Retina Surgeon.
Hear is a clear short version of events:
Pre-surgery eye best corrected vision before scar tissue one year ago 20/20.
Scar tissue formed in one year bringing it to b.c.vision of 20/200.
Had Vitrectomy/ERM surgery 4 months ago and ONE month post-op appt. I improved to 20/60 with some blank spots, but still happy.
My recent 4 month post- op. appt. I declined to 20/400 ! Was not happy. Still had swelling on OCT (center 385) and retina still not near perfect but fovea shape starting to come back. The WILD CARD from what I can deduct is that there is a missing swath of photoreceptor layer in the center fovea...Dr. chart notes called it "IS/OS Interruption"....but that missing swath was there also on my 1 month post-op appt. so doesn't really explain the decline ? Unless those photoreceptors were damaged during surgery and were still doing some work at the one month post visit, but then atrophyed by the 4 month post-op appt. ??????
I am really trying hard to understand this decline. Any ideas ???
I am sure the 2+cataract is contributing, but have a gut feeling there might be something in addition, however according to my Retina Surgeon who did both follow-up appts. my retina and central thickness has been constantly improving and gives me no other answers.
In regards to not being ready for Cataract surgery, he says the eye has to "settle down" in regards to swelling before I should do Cataract surgery.
I would really really appreciate any thoughts you have Jodie as I know you have trouble shot so many of these kinds of issues. ;-) Thank you !!!!!
Are you saying that your best corrected vision went from 20/60 to 20/400 in 3 months, and your ophthalmologist says that this decline in acuity is due to a cataract? Yet you're not ready to have cataract surgery because of your central macular thickness measurement. This makes absolutely NO sense.
1) Macular thickness is unrelated to cataract formation or the timing of cataract surgery.
2) I'm wondering if something besides a cataract is responsible for the decline in acuity in your affected eye?