mommy74
13 posts
Mar 06, 2010
9:06 AM
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My son (now 8yrs old, diagnosed with Coats at 5.5, undergone 4 rounds of laser and cryo - stable for the past 15 months until the eye exam today) has been diagnosed with an epiretinal membrane that is pulling up his retina (a pucker, I think they called it.) The doctor checked the Fundus pictues and did an OCT to confirm this. He says surgery is the only solution, at which time he'll also do some laser to remove the exudates - which have moved closer to the center of the eye now. He did mention there's a 10% chance of a retinal tear during surgery and a lesser chance of detachment.
Does anybody have any experience with this? And is surgery the only way? Also, if it is, are there any post-op things I should be worrying about? And will it disfigure his eye? He already seems to have some white scarring in the corner of his eye from the last round of cryo, when his eye was swollen shut for nearly 72 hours.
And will the vitrectomy permanently heal this problem or is the membrane likely to recur (the doctor said the chances of this were less than miniscule, but maintained that Coats complications/development can be unpredictable).
I'm getting a second medical opinion from another doctor we've regularly consulted, but I'd really really appreciate any information anybody can give me. All the advice and inputs I"ve received on this mesage board have been really helpful. If possible, please pray for my son. He's being awfully brave. He cried when he heard about the impending surgery, but I encouraged him to talk to the doctor about his fears and he's now back to normal.
Thank you so much, everyone.
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GavinBrown
4 posts
Mar 18, 2010
2:17 PM
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Hi there,
I too have been diagnosed with the epiretinal membrane (macular pucker) as a result of the various surgeries that I have had to treat Coats (its scar tissue). My understanding is that it is the only way to resolve the issue. However, you need to ascertain whether or not it is creating a real problem with the vision, or is it a nuisance (i.e. lines are not perfectly straight). I've had two Doctors treating me over the last two years, one recommended a vitectomy with peel to remove the pucker whilst the other (and most senior) didnt at the time. Since then, I've had another triamcinolone injection to fix the macular edema symptomatic of Coats. The Senior Doctor is now reviewing whether or not we do the Vitrectomy to remove the pucker and to clear out the "gunk" from withn the eye (his words sorry!!!) - may know in a few weeks. I do know however, that if you go down the path of the vitrectomy then the triamcinolone injections last about half as long as they would if you hadnt had it! Not sure about Avastin as it didnt work for me. There is a new nano type implant (also noted on the Board) Ozurdex thats just had FDA approval in the States. This would solve the tri shortened half life.
The Dr did say that the Vitrectomy is a pretty run of the mill op that he has had plenty of experience with. My Dr also concurs with what yours has said, that you are really only treating the symptoms of Coats as the disease itself is a genetic issue that has no real cure. Thats probably the hardest issue to deal with as you do need follow up exams at 1 or 3 month intervals to manage the symptoms and jump on any flare up before it becomes a bigger issue.
I would be interested to see how you go.
Kind regards
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mommy74
15 posts
Mar 20, 2010
8:37 AM
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Thanks for writing, Gavin. We're waiting to hear from another specialist from another city. So far, our surgeon and this other doctor have always concurred. In my son's case, the membrane is causing blurred vision - he says everything seems hazy. And at any rate, it looks like some procedure is required at this stage because the exudates are moving closer to the center of the eye and we do need to address that. I haven't asked about Avastin yet - I'm not even sure it's available here - we're based in India. I'm hoping to get the second opinion by Monday - will keep you posted.
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firemom
30 posts
Apr 02, 2010
7:25 PM
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My son had a vitrectomy on February 22 to reattach his retina. They injected a gas bubble to help put pressure on the retina to allow it to reattach. We went in for a check up two weeks after and he was able to see the big E on the eye chart for the first time in 5 months. Then we went in for another check up 2 weeks later and his vision was getting blury again. The doctor looked and said that he now had scar tissue forming on his retina and it had caused traction retinal detachment. We are scheduled to go see the retinal specialist in Boston this week and then on the 12 we go in for another surgery. I am not sure what the plan will be. I am not sure how I feel about the scelaral buckle.....has anyone had that procedure? I am not sure if this is what the doc will suggest but I am reading up on all of the possibilities. Thanks for any of your help!
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mommy74
23 posts
Apr 04, 2010
8:14 AM
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Dear Firemom,
Your son and your family are in our prayers. I do hope things work out well for your son. I think there are som other messages regarding a scleral buckle. My son is due to have a laser and cryo on Wed (if his cough clears up by then) or later next week. The doctor wants to wait for six weeks before deciding on what do to. Here's wishing you all the best. God bless.
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firemom
33 posts
Apr 19, 2010
6:38 AM
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Keith did have surgery on April 12th. We wound up going with a scleral buckle, a silicone bubble put in and he had to have his lens removed so that they could reach scar tissue that was forming on the area which creates the liquid in the eye. He was in a lot of pain for about 3 days. The swelling went down enough so he could open his eye in about 6 days. His eye is still extremly red, and bruised but he has it open. He says that he cannot see anything out of that eye anymore. Just dark. I am hoping that maybe it is just too soon to tell and that he will get some vision back. The recovery is about 6-8 weeks.
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mommy74
25 posts
May 09, 2010
7:52 AM
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I do hope Keith recovers soon. I will pray that he recovers quickly and gets some vision back.
My son is due to have the vitrectomy on the 12th. The surgeon said they have better instruments now (from 3 months ago when he first told us about the epiretinal membrane) and the recovery period should be 2-3 weeks, if all goes well. They plan to put in an air bubble (gas/oil is not required is what the doctor says) which should get absorbed within a week or so. The risk of a retinal tear remains but it is pretty low (1%) - that's what the doctor says and as a mother, I really want to believe him. The idea is to remove the membrane so that he can see once again see clearly out of that eye. Fingers crossed...
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