Macular Degeneration and Me

Low Vision and High Hope

Macular Degeneration Foundation

The Macular Degeneration Foundation is dedicated to those of us who have or will have Macular Degeneration. Filled with easy-to-read and easy-to-understand information, their website  provides pictures, safety information and many other resources.

They also fund grants for eye research including many different modalities.   I am confident you can find answers to questions, inspiration and most of all education when you visit the website.  Visit often.

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4 thoughts on “Macular Degeneration Foundation

  1. Katharine Emsden on said:

    Yesterday I got a 2nd opinion on my 3 1/2 year wet ARMD. The eye not responsive to injections was found to have a scar/pucker. I had read Pepi’s narrative in Dec. & had already tried to find a local Eccentric Viewing course. Unsuccessful, I got a book(Daniel L.Roberts, A Patient-Expert Walks You..) with exercises for this, which I shall start.
    I will return to my own specialist in 10 days & ask if the pucker is over the fovea, how long it may have been there, and if it is the cause of decline in Visual Acuity over the past 11 months (20:40 to 20:150 yesterday), and if he recommends surgery. (WEB-RN “usually requires no treatment”). Any further info from Pepi would be most helpful.
    Other eye is 20:30.(wet, responds to Avastin).

    • Thanks for writing Katharine. I’m glad you got a second opinion. That’s always valuable. I’m also glad you were able to fin I understand it is very good. I’m not sure if you had an OCT (ocular scan) of your pucker eye. If you did you can probably see quite easily how much the macular looks like valleys and craters compared to a normal eye. From what I understand this happens as the tissue pulls and puckers. My latest OCT last month shows the macular healing and starting to look normal although the internal swelling is still significant due to the three layers of tissue that were removed. NOTE: I can read the third line of the eye chart and have much more light getting into the eye and my depth perception seems to have improved.

      I also know that in many cases a macular pucker requires no treatment but my variable were a progressive deterioration in my vision in that eye in a short period of time and the fact that, after many years, the dry mac degen in my other eye was getting worse. The idea was to preserve as much vision as possible.

      I should mention that not every ophthalmologist performs this operation – it is very sensitive work. Please keep in touch and let me know how you are making out Katharine. I’ll think of you working on your eccentric viewing techniques.

  2. Katharine Emsden on said:

    Thanks so much, Pepi. I did have an OCT and a fluorecein angiogram with 2nd opinion MD. He told reporting nurse: drusen in both eyes, atrophying, no leakage. He told me:drusen thins the retina..but atrophy is worse.
    He discovered the pucker; for 3+ years I ‘ve had Lucentis,Avastin & 5 eylea shots to almost no avail (Eylea LOST 1/2 line each time March-Aug’12). Do you think this means I do not have mac.degen.in that eye, or do I have both mac.degen.+pucker? Left eye responds well to avastin & went from 20:50 to 20:30 in last 3 weeks. Pucker eye saw only the O on 20:100 line on Feb.13.
    Pucker eye seems “scratchy” about twice a day. I am very active & eat mounds of kale,spinach,take AREDS 2 and extra lutein and omega 3. On friend’s advice I bathe eyes in euphrasia diluted solution 3 x day.
    I go back to retina specialist Feb.25 & will ask:can he tell how thick the pucker is and if it’s right over the fovea. Can you suggest other questions? If time.
    Just started the eccentric v. I read quite well without glasses but want to prepare for need of peripheral. Local prof.low vision person said on phone, “Oh you must be doing ” ” anyway.” Hmm. K.Emsden

    • Hello again Katharine. It was good to read more detail of your exam. For those of you following this the fovea is an area at the center of the macula. As far as your question about whether you have ‘wet’ mac degen or not, I can only tell you my experience. Once I switched ophthalmologists and discovered I had a macular pucker that was the first question I asked. The answer was that until the pucker was removed (peeled) he would not be able to tell. Even looking at several year’s of OCTs (ocular scan) did not give him enough information. I had to wait about 6 weeks after my surgery for the internal swelling to subside enough for him to take a really deep look but was very happy to hear that my left eye is ‘dry’ mac degen and not ‘wet’. Of course that doesn’t mean that can’t change but for right now I’ll settle for that answer.

      When my former ophthalmologist diagnosed me with ‘wet’ mac degen in the left eye in Jan of 2008 he started me on Lucentis injections on an almost monthly basis. One thing I’m not sure of is whether that’s when the pucker started or not, but that’s what I use as a ‘marker’ about the time spent with him. I’m not sure whether he knew about macular puckers or thought them important but that’s also when I decided to find a doctor who was involved in mac degen research. That cutting edge experience made a difference for me.

      Something I will pass along is something I read on a website (not sure which one) but it’s important to remember that using your central vision to see is not the only way to see – there are other ways including peripherally. Amazing to think we can train ourselves to use our eyes in a different way. Keep up the good work and I’ll keep thinking of you.

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