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cme
Posted: 2008-02-23 08:38:43 By nancy j
Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.

Re: cme
Posted: 2008-02-23 21:14:29 By Patrice E
I have had several steroid injections for CME and the downside is that they hastened the development of my cataracts (which I had anyway).

Re: Re: cme
Posted: 2008-02-23 22:57:04 By nancy j
Hi Patrice:
I got the CME after cataract surgery. I understand that there is a 50% chance that my other eye will also develop CME if and when I get surgery in that eye. Since I have a new lens in the CME eye, I guess worrying about a cataract is a moot issue.

Re: cme
Posted: 2008-02-24 20:00:14 By Nikki s
just make sure your not allergic to the flourecine although i am not sure how you would find out unless you try it like i did i was really bad i broke out in hives and my chest was closing up had to go to emergency and get a shot of adrenaline and stay there for like 6 hours!

Re: Re: cme
Posted: 2008-02-24 20:09:50 By nancy j
I guess I'm lucky...I've had several fluorschein tests, and never a problem. Are you still struggling with your CME? I am scheduled to get a second opinion this Thursday just to make sure that my doc has covered all bases. What kind of treatment did you have for your CME?

Re: Re: Re: cme
Posted: 2008-02-24 22:21:09 By Nikki s
i tried the eye drops then went to the steroid injections they worked the first time but not the second then a third time right into the eye ball instead of the whites of my eye..still can see a little better but not fantastic ..i dont think i will let them shoot me up anymore i am to scared of getting a cataract because i do not have them yet and dont want them and do not want glaucoma..i will live with the blur and besides the money i am shelling out is crazy!!!!

Re: Re: Re: Re: cme
Posted: 2008-02-24 22:25:23 By nancy j
So sorry to hear that you still have it. I asked my doctor if I could do what you are doing...just live with it. He said no, because the swelling in your eye will eventually compromise the architecture of your eye and your vision could get worse, over time. Also, you could get a detached retina from the traction inside your eye caused by the swelling. Did you ever take systemic medications?

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Posted: 2008-02-25 00:11:11 By Nikki s
nancy,

i asked my dr. what would happen if i let it go and he said nothing...grrr dang michigan doctors...systemic medications? what does that mean? is that the injections? or drops? i have not taken pills of any kind to treat it. i stopped taking the trusopt eye drops they gave me terrible headaches and eye pain and i was still dizzy feeling.

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Posted: 2008-02-25 07:21:58 By nancy j
Systemic medications are pills or infusions. Sounds like you haven't had any yet, and that could be a good thing, because sometimes they are worse than the condition they are treating. What is your current vision in the CME eye? I'm lucky that mine is not that bad...about 20/50 without the Prednisone, better with it. Are you still in treatment? This is an awful thing to be dealing with. Maybe you should get a second opinion like I am. I know what you mean about it costing a fortune. I am always at the doctors, and it takes hours before I get out. Overall, it stinks.

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Posted: 2008-02-25 17:33:43 By Nikki s
well i have advanced rp and my vision in 20/200 in both eyes..so they say , one time they said 20/400 then 20/100 and now 20/200 so who knows i have always seen the same amount on the eye chart..when i got the shots it did clear up for a little bit and helped with my close up vision but still stayed the same on the eye chart.. i just hate going to the dr. because i am always there at least two hours!!! i dont know what i will do when i go in on april 1..but i dont think i will let him give me shots anymore..they dont last long enough to be worth all the money i am paying.

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Posted: 2008-02-25 18:17:05 By nancy j
I feel so bad for you, Nikki. I shouldn't complain, after hearing your story. How old are you? It sounds like your CME is secondary to RP. Mine is from cataract surgery. I hope you will see some improvement soon.

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Posted: 2008-02-26 07:56:40 By nancy j
are you able to work, and get around okay? I know that this is a hereditary condition, isn't it?

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Posted: 2008-02-26 17:22:20 By Nikki s
no i do not work, i get around ok i guess i do not use a cane although i should keep backing out of getting one..i either hold on to my boyfriends arm or my friends help me around i usually use the follow method..yes i inherited it from my dad... gee thanx dad!!!:)-

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Posted: 2008-02-27 08:32:36 By nancy j
Nikki, I wiish you the best with your treatment. I will see another doctor tomorrow to get a second opinion, but my situation is different from yours, since I don't have RP. Hang in there.

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Posted: 2008-02-27 18:13:14 By Darran Z
You don't have RP? Do you have another retinal disease?

Regadless of one has RP or not, CME is treated the same and even for those without retinal diseases, CME can be difficult to treat. So whether one has a retinal disease is not dependant upon how severe or the cuase of CME itself.

Darran

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Posted: 2008-02-27 20:41:39 By nancy j
My CME was caused by surgical trauma following cataract surgery. My surgeon did a beautiful job. I just happen to be one of those unlucky people who got CME following what is normally routine surgery. At this point, a year and a half later, I doubt that I will ever get rid of it but only control it with immunosuppressant medications. I'll be glad when Sulfasalazine (prescribed by a Rheumatologist) kicks in and I can stop taking Prednisone, since it's a killer med. My retina specialist ran out of options and referred me to this other doctor, which seems to be quite common. I firmly believe that I had some retinal swelling and inflammation prior to the surgery, which was undetected, but which was ignited by the surgery.

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