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Retinal Pigment Epithelial Detachment
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mmkbmom posted:
Hi. I am 42 years old and I was recently diagnosed with Retinal Pigment Epithelial Detachment. Is this a form of wet macular degeneration or are there other causes? Will RPED cause complete loss of central vision and what is the best treatment?

Thanks for any information you can give me.
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Alan M Kozarsky, MD responded:
I am sorry that you are having a retinal problem.

Retinal pigment epithelial detachment is in the family of macular degeneration but is not necessarily associated with wet (new blood vessel growth) macular degeneration.

The amount of permanent visual loss varies a lot. Treatment depends on a very skilled evaluation of your retina. In this regard, I want to make sure that you are being followed by a retinal specialist. If any doubt, you can find one at www.AAO.org and search with "find and eye M.D." with the criteria of retinal specialist.
 
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mmkbmom replied to Alan M Kozarsky, MD's response:
Dr. Kozarsky,

Thank you for your message. Yes, I am seeing a retinal specialist. Can you direct me to some online resources that discuss retinal pigment epithelial detachment? Does it usually occur unilateral or bilateral? I find it very difficult to see with my right eye that has the detachment in low lighting. Is this "normal" for retinal pigment epithelial detachment? What causes (steroid medications, autoimmune diseases, heredity) retinal pigment epithelial detachment?

Thanks for any information you can give me.
 
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Alan M Kozarsky, MD replied to mmkbmom's response:
I just tried myself to do a search for basic information about retinal pigment epithelial detachment and did not find any source with the kind of information you are seeking. There are many "scholarly" journal articles discussing treatment of complex cases but nothing that seems to be written for the non-ophthalmologist.

I would suggest writing down all of your questions and bringing them with you to your next appointment with your retinal specialist who, most importantly, can answer them in the context of your individual situation.
 
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mmkbmom replied to Alan M Kozarsky, MD's response:
Thank you for your message. Is it unusual to have two RPE detachments in the same eye? My fluorescein angiogram shows several areas of premacular fluorescence. What does this mean?
 
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Alan M Kozarsky, MD replied to mmkbmom's response:
No, I don't think that two RPE detachments in the same eye is that unusual. The angiogram appearance that you describe is also consistent with RPE detachment.

Again, write down all of these and all of your other questions and bring them to your next retina appointment. The doctor who has examined you can answer these questions much better than I can.
 
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Karossi responded:
To mmkbmom: I am a female, also diagnosed at age 42 with pigment epithelial detachment. I had worn day and night contacts for years and had never had any problems with my eyes. The problems started in February with extremely inflamed corneas, blurred vision and dry eye disease.. After several months, i was sent to a retinal specialist who confirmed the RPED. He hoped it would go away on its own and i will be rechecked at the end of June. My doctor told me that this problem is normally found in men who are under a lot of stress. He said he will remove the cyst if it grows since it is causing blurred vision in my left eye.I cant seem to find a lot of information about RPED. I am very healthy, take no medication, mother of three, and i am also a runner. It is so hard to understand where this came from. It has been a huge life adjustment to have eye problems. Please let me know how things work out for you.
 
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Karossi responded:
Mmkmom...i am a 42 year old female, healthy, married mother of three also diagnosed with RPED. I do not take any medications and I am a runner to stay in shape.. The RPED is causing blurred vision in my left eye. I never had eye problems before and had worn day and night contacts for years....until now! Please let me know how things work out for you. My next appointment is in June. The doctor will determine then whether or not he needs to remove it. It is very stressful having eye trouble. Best wishes...
 
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mmkbmom replied to Karossi's response:
Karossi,

Hi and thanks for your message. I have two RPEDs in my right eye and one area of concern in my left eye. I have several chronic health conditions and I take several medications. Do you have difficulty seeing in low light situations? I have a hard time seeing when the light is low and when I drive at night. When I look only out of my right eye lines/images are distorted and darker. I also feel sick when I try to look only out of my right eye. Do you experience a sick feeling when you look only out of your left eye with the RPED? Take care.
 
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rohvannyn replied to mmkbmom's response:
What was that like when it first started? I ask because I have what appears to be a loose blood vessel floating around inside one of my eyes.
 
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donitza responded:
Hi, I have an RPE since age 44, was in good health and it just happened when I was talking to my son, looked like his face was melting. I freaked out. No explanation. They did find a scar from one on my left eye from years past, they believe but out of my field of vision so that it never really bothered me. It's scary. The worse adjustment is the driving. Apparently, there is nothing they can do for it and they give you no answers just check you and send you home. I worry about my left eye a lot, all the what if's. My doc says, "well then, we will do something," Which makes me angry because if they could do something why didn't they do it when it happened instead of watching it to see if it would go away or self correct or whatever. Here, I remained hopeful and it atrophied. So, I have permanent vision loss in my right eye which causes driving anxiety. To make matters worse. I was a technical writer. I can't do that kind of up close perfectionist type work on computers anymore...that was my education. So, my advice is see however many doctors you have to when it first occurs and don't trust in just one specialist. It's not their vision. It's yours. There's no cure that I know of yet. However, if they can replace a part of a person's macula why can't they replace it for RPE or even layers? I don't know whey we have to walk around with blurred vision loss? It's really upsetting. I feel for all of you. I do.
 
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mmkbmom replied to donitza's response:
Hi. I had laser surgery that helped to improve my vision in my right eye. The laser surgery was needed because the detachment was not improving on its own. Please ask your doctor about laser surgery.


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