Macular edema and ERM

[AnnaE]

I am undergoing new turmoil over my eyes. I called my doctor today for clarification, but got no answers. I put in another call for tomorrow.

In my left eye, I now have early band keratophy, in addition to hypotony, aphakia and the effects of 5 retina surgeries.

In my right eye, I also noticed on my office visit sheet that the doctor has added macular edema, but he has not discussed it with me.

In my right eye, I knew that I had an ERM. Is the macular edema there related? This is my good eye. They are two different terms. I know a lot of Latin and Greek.

I am anxious, or I would read all about these two. I will read later, but right now I need a some guidance. Please orient me a little to macular edema, especially as it relates to epiretinal membrane.

My eye is also sinking. Is that a result of the keratophy?

My usual eye surgeon told me, two weeks ago, that I did not need to come back for six months. I was astounded. I had come in because my IOP is also down again. He was not going to follo it up? Also, he did not notice the cornea and the sinking. I feel like I am not getting much help with my eye.

I saw another partner there on Friday, and he encouraged me to go to Dalls, where I will see Dr. Wong of Texas retina associates.

I do not know if I can have any confidence in the doctor have been seeing. He has also told me my right eye will be fine, because of the cerclage. Yet he and I had already discussed that I can always get new lattice, and be in danger of detachment. I do not understand him, and I do not know that I want to confront him. I might get just anger back. I might have to try #3, or see the doctor in Dallas.


Thanks

[AnnaE]

I meant to say that I probably will not see #2 again. I trust #3 so far, and I plan to check in with him. The doctor in Dallas is sending the report to him.

I also meant to say that it is tough to travel to Dallas, but my eye is worth it.

Dallas is a more progressive city, more sophosticated.

[JodieJ]

It sounds like your trip to Dallas was very productive.  I hope it will be possible for you to follow up with the Dallas doc regularly.  It's important to have a doctor you trust.  And I'm very glad to hear about the good news you heard.

Jodie

[AnnaE]

Just bumping up this message.

[AnnaE]

You know, maybe they are all nuts! Dr. #2 impressed me as a jerk the first time I saw him, and so far, that is what I think he is. I was willing to give him a chane, because I felt that it might hurt #3 if I switched to him, plus I felt that the both of us were vey controlling.

Last time I saw #2, I  walked out of there thinking that he was not very smart, because he was treating me as if I were stupid. I think money is more important to him than intelligence.

Anyway. I am back and exhausted from the Dallas ozone. Several trips back, I saw a restaurant called Ozone Cafe and I cracked up. I have very bad asthma.

Doctor from Texas Retina is very refined and helpful. I will not lose my eye. I have some problems, and I was neglected by the second doctor in the same practice. But now I have a doctor in Dallas. I need cornea treatment (chelation for the calcium deposits), but it is nothing compared to the scare of losing my eye. I am thinking of seeing him every three months, not every 6. He recommended that I see someone every 3. He suggested a change in my drops, and to have a cornea specialist do the chelation very soon. I will call and ask if he can recommend a cornea person in Austin.

The doc at Dallas retina associates also said that he thinks my right eye will never bother me again. #1 and 2 said the same, but I cannot trust them. It was good to hear it from him. I did not get a chance to ask him if he knew how I could discover what really happened to my eye. That is a difficult question to ask.

It is difficult for me to travel to austin, because of asthma/allergies, and chronic pain. Also I am really suffering from taking steroids for my asthama a few weeks ago. Of course, I think my eye is worth it.

I will see #3 if he will see me/isnot crazy, if I need someone locally. I do not think he is crazy.

Doc#2 here said that I was fine and need not return for 6 mos. The medical assistant here said that my eye was dying. Last thing I needed was either of their opinions.

I don't think I will even see #3. I do not want to confront him; I am afraid he would make any discussion difficult to me. Of course, I would like to know if he IGNORED my cornea, did not tell me. I credit the doctors here for telling me to watch out for my cornea. #1 had mentioned cornea side effects from the silicone, but he said it to make me miserable, because I had questioned him, and he did not really allow questions. Apparently, neither did #2. Yet I took notes from #1.

I also talked to my ocularplastic ophthalmologist before I left. She was reluctant to believe I was going to lose my eye, since I had no pain, and she had seen it in January.
I also have her to check it with.

Thanks,

Marianne

[JodieJ]

I'm glad that you are getting an independent second opinion in Dallas.  In your place, I'd fire Doc #2 and see Doc #3 if I needed someone local.

[AnnaE]

It was not the assisstant who found them. It was doctor #3. He kept saying my eye was very abnormal, and he sounded very concerned. It is hard for me to talk or write. I guess they thought it did not matter what happend to me, as long as they got rid of me. They never really figured, really,as it turns out,,,

I am so unbelieving of this, ans so worried. I will be back online maybe Saturday and let you all know waht the doctor is Dallas says.

This second doctor is the partner of #1.  So is the third. Right now, I do not know what I will do. #2, however does not seem to qualify to be my doctor, it seems.

[JodieJ]

That doctor seems very uncaring.  I hope you find someone better in Dallas.

[AnnaE]

I discussed that with the assistant a long time ago. She said I should come in when I needed to. That is what I had already intended to do. I felt that he could be wrong, of course.

I never thought he would neglect me. He told me to come back in 6 months. I had questions that I could not ask about on that visit, because he kept aiming at the door.

I went back in 2 weeks, and his assistant found serious prooblems he never not or mentions, that did not develop in 2 weeks, because I had noted them a month ago or more, but he was always aiming at the door. He obviously did not examine me with care, if I, a lay person, could see the symptoms.

It is incredible what has happend--second time in the same place.

[John C Hagan III, MD, FACS, FAAO]

Concentrate on keeping what vision you have in the better eye. PB is often not correctable.

JCH MD

[AnnaE]

I found out this am that my phthisis has set in on my eye; that's why it is sinking. The word is that there may be no more solutions to stop it. Hence, the trip to Dallas. Dr. Wong won't be there until next week, so I am seeing. another doctor. #3 says there are all good there and Dr. Hagan recommends them all, also. I am not giving up yet, but it seems grim. With all I have been through, I may decide to have any surgery in Dallas.

[AnnaE]

I am going to Dallas on Friday. I talked to the office today, not to him. The ERM has not worsened.

Look at all the things that #2 missed. Sinking eye, band keratopathy, he let the lower IOP to chance for six months. I do not know that it's worth it to confront him; I am tempted to just quit him. He has taken a lot of my time going in the wrong direction, not to mention the anxiety he has cost me. Also, I think its elevated language in reference to #1 is an attempt to minimize what I have been through there, and that really angers me. Before this time, he said four months, I came back in 3 weeks. The last time he said 6 months, an I returned with severe problems that he should have noticed,. He was putting my eye in danger and confusing me, and perhaps giving me the runaround. However, since my condition is so serious, I cannot dismiss the situation with those words. I think it is more damaging than "runaround." I cannot see letting his errors go. He has contradicted himself several times, as I said earlier, on crucial matters. I don't know whether he forgets what he saiys, or he thinks I do. The last time I left there, I realized that he has no idea how smart I am. He does not want o answer questions. He uses meaningless, non specific words.

#Well, I have only 3 doctrs left in the practice, and the last one sees 40 patients in one morning. I am sure that he speaks little and they are not allowed to talk at all,

The third one has always been reliable.

[JodieJ]

I think that it's very important that you and your ophthalmologist have good communication.  You should contact his office for answers to your questions about your ERM and possible macular edema.  It does not sound to me like your ERM has gotten worse.  (In the majority of cases, an ERM does not get worse over time.)  In your place, I'd let my doctor know that I'd prefer being seen again sooner than six months from now.

It might prove to be very helpful to get a second opinion from Dr. Wong in Dallas.  That's what I'd do.

[AnnaE]

The doctor put down macular edema but ordered no OCT, and let me go for 6 months,. Does it sound like the ERM is getting worse? I am so scared that something will go wrong with my right eye.

My ciliary body does not work. My pressure as been five or below off and on for 17 months. Is sinking a sign of PB? Yes, I have read about PT and that is why I am worried.
Does the keratophy signal PB? Keratopathy is a very bad sign, right?

So you think that Texas Retina is a good move? You recommended them to me last December.

[John C Hagan III, MD, FACS, FAAO]

1. Unfortunately it sounds like the "bad" eye is developing pthisis bulbi. This is went the eye stops producing aqueous fluid, the IOP goes to zero and the eye starts to shrivel like a grape turning into a raisen. It is the fate of many sight-less eyes with many serious problems including low pressure.  I doubt much can be done but Texas Retina Associates is well know and respected.

2. Epiretinal membranes (ERM) predispose to fluid collecting under them (macular edema).  So there may or may not be macular edema. On OCT is used to tell.

JCH MD