Retinopathy and Macular Edema?

MCM5278

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Hello, I have a few questions, more so about the edema part of it. I've had a few laser sessions on both eyes and I think I'm done or for now with the laser. But with the macular edema about every two months my central vision gets blurry and I have to go and get a shot of avastin. Has anybody had experience with macular edema. What is usually the best treatment for it. And will or could this ever slow down or stop and not re occur every two months. Could it eventually effect my vision, or can it always just be treated and clear up like it does now. It's hard to fit all my questions in at the opthomologist, he is always in a rush. Thanks for any input.
 

noblehead

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Not really sure of the answer, just make sure to ask the Ophthalmologist when you have concerns like this, they are busy people but they should still have time to discuss things with their patients.

I'm not sure if Macular Edema is mentioned in the following site, but it is has a wealth of information with regards to diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html
 
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Omnipod

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macular edema can eventually affect your vision. It can lead to blindness.
I have maculopathy in both eyes. I had a few lengthy discussions at St Thomas Hospital Opthalmology. They really are fantastic. Basically you have to keep your HBA1c as low as possible.. You have to watch your blood pressure too.
So far, since diagnosis mine has now slowed down and no further damage.
I read an article that the damage can reverese over the years with tight control. i guess you need to make sure you have your eyes checked every 2/3 months initially. having too many bad hypos are also bad and can cause damage.
 
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MCM5278

Member
Messages
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Type of diabetes
Type 1
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Insulin
Thanks guys, I appreciate your input and advice. I think I need to record my convos with my opthomologist because I'm super ADD and I forget what he says sometimes. My optho told me it was rare for a diabetic to go blind these days as long as they are getting treated. is that true.The tough part is I go back and forth between two opthomologists and they both give totally opposite answers sometimes on stuff. Has anyone ever heard of the ellex 2 rt? It's a new type of laser that right now is only used in London but is soon to be more places. Supposedly it doesn't hurt and doesn't damage the eye. It doesn't take away peripheral vision or anything like that. It also rejuvinates the eye.
 

Omnipod

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531
Type of diabetes
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not heard of it.
I used to be treated by 2 clinics who both gave different advice and who gave me different results. Everytime, Id have my eyes scanned or photographed, they would let me leave and then say they will post the results. I never got any results from them and neither did my GP. I then asked my GP to refer me to a eye clinic that would be more efficient. I was referred to St thomas in Waterloo. They are fantastic. My first 2 appointments lasted hours because they were so thorough. They then made me return every 2/3 months so they could see if my eyes were deteriorating. They give you your results at the clinic and the opthalmologist has a proper discussion with you BEFORE you go hom.After a few appointments they said I only need to return every 6 months. I had a appointment last week and they said that my condition had improved. They also keep a record of your HBA1c. My HBA1C had dropped steadily over the last year or so. They have now said that I only need to return in 9 months and that if I continue improving, that my eyes should improveeven more.

I used to go to St Georges Hospital and to st Johns on Lavender hill. Absolute waste of time and they were completely useless. If anyone does go there, Id urge you to change.
 
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Caesar

Active Member
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Type of diabetes
Type 1
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Insulin
Have you heard of the Noctura 400 sleep mask?
http://noctura.com/

In the webpage it's stated that the first Noctura 400 trial "involved 40 patients with advanced Diabetic Macular Oedema" and that "a reduction in oedema was reported at the 3 month check-up". I'm a user of the mask despite the fact that I've no retinopathy traces yet. I'm using it for prevention purposes as the mask works by preventing retinal hypoxia. But I remember that the manufacturing company of the mask, PolyPhotonix, showed some of the positive results achieved by patients at very advanced retinopathy stages during the presentation I attended before committing myself.
 

pshuttle

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Just out of interest, how much is the Nocturna? I notice that it is not a buy once, own it for a lifetime item, and that it needs to be replaced every 12 weeks?

Thanks,

Pete
 

Caesar

Active Member
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Type of diabetes
Type 1
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Insulin
@pshuttle
I've been paying £250 every 3 months that includes the mask and the eye screening. I was told I could stop at anytime but at the moment I feel comfortable about it.
 
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