The Story of my Diagnosis of Wet Macular Degeneration

Posted by realitytest @realitytest, Nov 11, 2021

My story and a query.
A few days ago I got the devastating diagnosis of wet macular degeneration in my right eye (dry too in both it seems). I only thought the right lens of my new glasses had been improperly ground as it was blurry. I had already been unsatisfied with monovision LASIK surgery I'd had six years ago. The. right eye (distance) hadn't worked. Since then as before, every time I went for eye examinations (probably not qite often enough), I especially asked them to check for macular degeneration as my mother was blind from wet macular degeneration. However, all had said I showed no sign of it, both before and after that eye surgery. In fact, before it, ten years ago, I had stopped the AREDs I'd been taking as so many had urged me saying it was a waste. That it was an either/or situation and I was "safe". I figured it was just one of the supplements I was taking superstitiously (and NOT cheap either). You know, how doctors sometimes suggest such pills are " just giving you expensive pee".

I even took down the Amsler grid on my wall! When my vision worsened, the diagnosis of cataracts explained it and they were removed with a special lens that also worked on my astigmatism, and then that LASIK.

Well, after the "glasses failed" recently, I found myself covering my right eye to read clearly and one day, I covered the "good" eye as an experiment. Wavy lines! Was given an emergency appointment with the busy ophthalmologist who diagnosed wet macular degeneration. They got me in with a retinal specialist the next day. He said the examination showed not only bleeding but evidence of OLD bleeding so it must have been going on "quite a while". He started me on Lucentis that same day, day before yesterday.

HOW COULD THIS HAVE HAPPENED WITH ALL THE EXAMINATIONS I'D HAD? Has anyone else had their condition happen so suddenly? Were the optometrists, even the surgeons negligent? I'm in a state of shock.

Interested in more discussions like this? Go to the Eye Conditions group.

Hi @realitytest, I can only imagine your concern about how things could deteriorate so quickly and that you're in a state of shock. Eyesight is so important and the thought of losing it, frightening. Allow me to tag fellow members and bring @sweede536 @mjj @pacer3702 @lioness @lvon @heal33 and @dsh33782 into the discussion. They may have some experience with wet macular degeneration to share with you.

Is treatment with Lucentis (ranibizumab) helping? Do you have a follow-up appointment to see if you need further injections?

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@realitytest Welcome to connect ,thanks Colleen I have dry macula the wet as I understand it when the retina starts to leak you can get injections in
that affected eye but your opthmalogist will send you there at that time. Wear dk. Sunglasses and a hat on sunny days protect your eyes as much as you can also the computer/cell phone screens are bad to look at all the time as T.V also I also have glaucoma so take drops at night .I understand they are working on a shot for dry now also

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Hi, Colleen. Many thanks for writing and referrals.

I think the Lucentis helped some (though at first it was worse).
I'm kind of concerned about this retinalogist, though, but there aren't that many in my rural PA area. (all in one practice) and I don't want to antagonize him.

He scarcely gave me the time of day, and I definitely get the sense he is one one of those "MDeities" who does not take kindly to any questions about his pronouncements. (or any questions at all), besides which I don't trust what he does tell me. I. think it is deliberately over-optimistic to the point of lying in order to avoid eliciting discussion and questions which would cost him precious office time. (Read an interesting article about the unique propensity of ophthalmologists – retinalogists especially? – to write office notes in code so patients can't read them. Thus they avoid needing to reply to questions.)

That's allegedly primarily to minimize time lost time by "wasteful
discussions". That means I can't participate in any informed decisions whereas there are surely differences of opinion which the patient should be apprised of (perhaps by a second opinion).

(My mother now blind from WMD, had her period of sightedness lengthened by about ten years by the good fortune of living near a top-notch retinalogist. He started her well ahead of the curve on Avastin – long before it was officially approved in this country). That doesn't even take into consideration in my situation, the importance of doing whatever possible to find alternate AFIB treatments to avoid taking blood thinners with wet AMD.

This physician told me with an air of infinite confidence, "I guarantee you will not go blind, Amanda" when I know perfectly well what that means – namely, that I will retain enough peripheral. vision to only count as LEGALLY blind, while being effectively blind from the POV of function.

(My mother, 98, is not "blind" by that definition either but she hasn't been able to see anything, for a long time, not recognize faces much less read or navigate.)

He. also assured me he would stabilize my vision, when I know such promises are impossible.
I am afraid if I antagonize him as a "problem patient" (from seeking a second opinion at a highly reputed clinic out of the area), I risk losing the only nearby retinalogist who can inject me. What a bind! He didn't even mention to me that I also have a particular Dry Eye Condition, which requires special attention and care. (I broke the code!).

He made no mention of the advisability of minimizing screen use (my primary activity), wearing dark glasses and protecting my eyes from strong sun – all of which I only read HERE. (Thank you!). Furthermore (although I welcomed it in order to begin treatment ASAP) he allowed me to drive home alone after my injection – and all those drops! – even though it grew very dark before I was able to leave. (Narrowly missed several accidents). Do not feel I am in good hands.

This is not the only serious medical problem. about which I have been misadvised in the 40 years I have lived in this rural area (only saved my and my children's lives by special medical education and sheer luck ). I don't know what to do. I'm 75 and live alone, with a limited income and am feeling very anxious and depressed since this arose.

Not to forget the frightening. combination problem of being prescribed anticoagulants for atrial fibrillation. It effectively makes me a hemophiliac (bled for hours from a tiny nick from shaving my leg). Without being a professional, I can't believe I shouldn't be advised by a cardio- electrophysiologist in case there is some alternate treatment to reduce my stroke risk – one that doesn't predispose me to retinal bleeding. (I. see from reading, that patients taking blood thinners DO have their progression of WMD greatly hastened to blindness both in ones first afflicted eye, then having the second so affected. )

Advice, friends?

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@lioness

@realitytest Welcome to connect ,thanks Colleen I have dry macula the wet as I understand it when the retina starts to leak you can get injections in
that affected eye but your opthmalogist will send you there at that time. Wear dk. Sunglasses and a hat on sunny days protect your eyes as much as you can also the computer/cell phone screens are bad to look at all the time as T.V also I also have glaucoma so take drops at night .I understand they are working on a shot for dry now also

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Greetings @lioness! Thanks very much for writing. Yes, Dry ARD is quite different. Whereas all the wet kind begins dry, only 10% progress to the wet kind (and the profession doesn't know what causes the change).

I have been diagnosed with Dry ARD in both eyes and wet in the right eye. only. I had no idea I had an eye problem apart from needing better glasses. I still don't know when the dry kind is diagnosed and what treatment is advisable (whether there is anything knowing could have helped, to avoid the progression.)

My understanding is that Dry ARD is fairly common – so much so that many patients never know they have it. I. greatly regret having the diagnosis missed (I wonder how). but don't yet know what its symptoms are nor how it affects vision. I am gratefully following your advice about eye care. though it seems that "the horse is out of the barn" regarding. care of the wet kind (apart from the injections which I just began.)

Yes, I read that they are working on injections for the dry variety, wondering what their goal is. Do they destroy the abnormal blood vessels forming under the thinning retina, before they start to bleed?
Hope they succeed soon, thus sparing you and many the blinding stage of the disease!

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And yes, I am already scheduled for my next injection. They are part of a series hoping to stabilize. ones vision loss at its present level for as long as possible.
Sadly, this disease isn't amenable to cure but only postponing the inevitable – at least, at this stage. (Stem cell transplants to restore lost vision are probably in the offing, but I'm afraid a decade or two away from approval.)

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@realitytest I'm sorry yours has progressed to injections. A friend has the dry but unfortunately she has lost most of her site Mine isn't as good but still can see pretty good. .She ask me to read to her the book she has gotten a John Grisman so we started it today .I'm waiting also for stem cell but probably won't be for awhile. Just keep doing and enjoying your life as you can .Happy Thanksgiving

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@lioness

@realitytest I'm sorry yours has progressed to injections. A friend has the dry but unfortunately she has lost most of her site Mine isn't as good but still can see pretty good. .She ask me to read to her the book she has gotten a John Grisman so we started it today .I'm waiting also for stem cell but probably won't be for awhile. Just keep doing and enjoying your life as you can .Happy Thanksgiving

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@lioness71

Thank you for your commiseration.

But I must ask…are you saying the DRY kind can also cause blindness??
I had no idea. I. thought only the bleeding kind (wet) killed the macular cells (hence central vision).

Or did your friend also have the wet kind? Is she getting injections? How long has your friend had. AMD (so far as she knows)? How was she diagnosed?

A very happy Thanksgiving to you too!!

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@realitytest

@lioness71

Thank you for your commiseration.

But I must ask…are you saying the DRY kind can also cause blindness??
I had no idea. I. thought only the bleeding kind (wet) killed the macular cells (hence central vision).

Or did your friend also have the wet kind? Is she getting injections? How long has your friend had. AMD (so far as she knows)? How was she diagnosed?

A very happy Thanksgiving to you too!!

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I was diagnosed with Macular Degeneration (Dry) 14 years ago, I go to my Ophthalmologist yearly, and I have seen very little progression with my Macular Degeneration, Thankfully. I have been taking eye vitamin supplements with Lutein, Zeaxanthin, Astaxanthin since my diagnosis. No way to prove that it has helped stop the progression, but I will keep taking them. Can’t hurt. I am 72 years old. And yes I believe you can go blind from Dry, since my Grandmother and my Father did.
Kathryn

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@realitytest

@lioness71

Thank you for your commiseration.

But I must ask…are you saying the DRY kind can also cause blindness??
I had no idea. I. thought only the bleeding kind (wet) killed the macular cells (hence central vision).

Or did your friend also have the wet kind? Is she getting injections? How long has your friend had. AMD (so far as she knows)? How was she diagnosed?

A very happy Thanksgiving to you too!!

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@realitytest Yes she only has the dry and you can go blind from this also. I'm on eye vitamins that have lutein and zeaxnathin Her vision started to deteriorate about 4 years ago now she can hardly see anything mostly very blurred So I go up to read to her we both love books mysteries I'm from western PA now in Calif.What part of Pa?

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@kathrynmc

I was diagnosed with Macular Degeneration (Dry) 14 years ago, I go to my Ophthalmologist yearly, and I have seen very little progression with my Macular Degeneration, Thankfully. I have been taking eye vitamin supplements with Lutein, Zeaxanthin, Astaxanthin since my diagnosis. No way to prove that it has helped stop the progression, but I will keep taking them. Can’t hurt. I am 72 years old. And yes I believe you can go blind from Dry, since my Grandmother and my Father did.
Kathryn

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Thank you, Kathryn. According to what I've read those eye vitamins DO help slow the progression (although some sources say they only work at a certain more advanced stage.).

Fourteen years is a VERY good run of good sightedness! May it continue ever after! (I'm assuming you have the condition in both eyes.)

I'm still confused (storing up questions for a retinalogist). Some people. say, "oh, good. You have the wet kind so you can have injections", while others (this thread) say it's worse, a sign of greater risk and blindness.

I wonder how much the qualification for injections is a function of what helps the type of disease in that eye, and how much it's a matter of insurance coverage. (The. expense is becoming an increasing. factor in whether or not injections are approved.)

I know researchers are working to come up with injections specifically designed for Dry Macular Degeneration. I. thought the injections effectively dried up the abnormal blood vessels, so I guess they must exist in any eye with macular degeneration whether or not they have started to bleed.

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Wet AMD is considered a more advanced stage of the disease than dry AMD. Wet AMD can progress rapidly to severe vision loss, if left untreated, whereas dry AMD progresses more slowly. Typically, dry AMD (in both eyes) precedes wet AMD, but about 90% of people with dry AMD don't develop wet AMD. The good news with wet AMD is there can be excellent maintenance of vision, if patients are consistent in adhering to their injection schedule. There can even be improvement in vision after the first few injections, especially if the wet AMD was caught early.
The following newsletter/website is a great source of information:
http://www.webrn-maculardegeneration.com

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Thanks so much, pacer. That was a big help and I'm looking forward to the article for more information. Sometimes I find myself slipping into panic mode.

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