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Slow degradation of my vision. Seeing a retina specialist
Eye Conditions | Last Active: Jan 19 10:38am | Replies (154)Comment receiving replies
I’m fine with questions! Most people don’t want to talk with me about it!! I had Fluorescein angiography when it was decided that I needed injections in my left eye. I have dry AMD in both eyes but it’s the left one that has the geographic atrophy as well. Every 3 or 4 injections I get an OCT - I believe they are watching a measurement- maybe foveal thickness. As it improved and stayed stabile with injections we started extending the weeks between. I started at four weeks and we tried as far apart as 10 weeks but the OCT showed a worsening at that long an interval. I’m back to 6-7 weeks. I’m at the Mayo Clinic and my eye doctor is a retina specialist though I also see a glaucoma doc once a year. I’m getting injections of Avastin rather than Lucentis. There is no treatment (yet) for dry AMD or the geographic atrophy that can come with it. Maybe there will be in a few years.
My injections are on a schedule not based on my reports. If I were to have a dramatic change then I’m supposed to call right away.
From what I understand, wet macular degeneration can be improved by the injections so maybe the doctor feels that it is better to wait if they feel it’s a stabile situation and even if it advances slightly the injections might be able improve anything that happens - rather than putting you through more injections. If you have any sudden or noticeable change in your vision, I would think would need to be addressed immediately. Can you ask them why they feel it’s okay to wait? Good luck!
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Basically, they say "you can't fix it if it's not broken" - in other words, if those abnormal capillaries aren't currently leaking injections have nothing to fix.
However, I note that my retinal thickness is becoming thinner and with that my vision is growing blurrier. He just says it goes with the territory and nothing can be done.
I have noticed on CONNECT that the most treated patients seem to be those going to Mayo. I certainly wish I lived nearer (I'm in Central PA) but even so I am considering a trip as hard as it would be for be..
Note that I take a blood thinner (for atrial fibrillation) and ever since I got the eye diagnosis I have been worried about the effect of that medicine on the wet macular degeneration. Basically, that the powerful blood anti-coagulant effect (if I get the smallest nick, I bleed extensively and at length) must be endangering my already endangered retinas.
Sadly as you know, wet macular degeneration in incurable at present leading eventually to blindness.
My gut reaction - fear that my AFIB medicine would hasten the path to blindness - was confirmed by online research and doubly confirmed by consults by expert retinologists. v(Ever since learning this, I have been looking into alternatives to blood thinners -they protect against stroke - and I am settling on the Watchman cardiac procedure, though with no little trepidation for complex reasons.
My thinking is that even if a treatment doesn't cure wet macular degeneration, if it has a significant effect on delaying this inexorable path, it's worth pursuing.
For the record (as I'm sure you know) the wet macular degeneration's blindness starts with the critical central vision, at the macula itself - the central retina. Doctors often stress the patient is never totally blind as they retain some peripheral vision but I say that's a virtually meaningless difference.
My mother has long been blind from macular degeneration and is unable to read, recognize faces, or get around safely (she frequently falls) - all that really matters from vision. (Not to mention that like me, she was an artist, now unable to act on her profession!)
I must admit I am not satisfied with my doctors' judgment, so perhaps I have no choice but to travel to Mayo - extra hard on account of mobility and economic issues.
Thank you again for all your feedback. (Which branch of Mayo are you treated at?)