Will I Go Blind?

“Will I go blind?” is one of the most common and emotionally-charged questions asked when a person gets a diagnosis of many of the retinal diseases such as Age-Related Macular Degeneration, Stargardt’s Disease (and others) that damage central vision.  I did several searches with different variations of the question and here are some of the the answers I found.

Terminology
  • This is just a partial list of terms, please go to the the complete list – click here:
    • Total blindness refers to an inability to see anything with either eye.
    • Legal blindness is a level of vision loss that has been legally defined to determine eligibility for benefits. The clinical diagnosis refers to a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less. Often, people who are diagnosed with legal blindness still have some usable vision.
    • Vision loss refers to individuals who have trouble seeing, even when wearing glasses or contact lenses, as well as to individuals who are blind or unable to see at all.
    • Visual impairment is often defined clinically as a visual acuity of 20/70 or worse in the better eye with best correction, or a total field loss of 140 degrees. Additional factors influencing visual impairment might be contrast sensitivity, light sensitivity, glare sensitivity, and light/dark adaptation.
Links & Answers
  •  From http://www.southlandeyeclinic.com/FAQ/macdegen.html
    • “Will I go completely blind from AMD?
      No. You will never go totally blind from AMD. AMD affects only the central vision. Around the macula is the retina responsible for side vision (peripheral vision). The side vision lets you know what is around you. You will be able to walk around, dress yourself and do most daily tasks. Peripheral retina is not affected by AMD and there is no loss of side vision.”
  • From http://www.besteyedoc.com/milford/macular-degeneration-faq.htm
    • “Q.  Will I go blind?  A.  No, patients do not go blind from wet or dry macular degeneration. You can, however, unfortunately become legally blind which means that the central vision is poor enough to result in your better eye seeing no better than 20/200 vision. However, being legally blind is not the same as medically blind.”
  • From https://nei.nih.gov/health/maculardegen/armd_facts
    • “AMD by itself does not lead to complete blindness, with no ability to see. However, the loss of central vision in AMD can interfere with simple everyday activities, such as the ability to see faces, drive, read, write, or do close work, such as cooking or fixing things around the house.”
  • From http://www.nhsdirect.wales.nhs.uk/encyclopaedia/m/article/maculardegeneration/
    • “AMD doesn’t affect your peripheral vision (side vision), which means it will not cause complete blindness.”
  • From http://www.brightfocus.org/macular/chat/what-you-need-know-about-dry-age-related-macular
    • “GUY EAKIN (interviewer): So you say 10 to 15% progress to the wet form, I like to hear 85 to 95—85 to 90 don’t progress to the wet form, but it’s the same message either way. We know that many people out there are fearful that AMD will blind them, it’s described in so many places as a blinding disorder and I understand that has some technical context to it that may, it may not be the complete story just to say that it’s blinding.  So what do you tell patients when they ask you, “Will I go blind?”
    • “GAYATRI REILLY (The Retina Group of Washington, “who has excelled in research, patient care, and educating other eye care professionals about treating diseases such as age-related macular degeneration) : Well, you know, I think it’s a question I get every single day, and it’s extremely important to address.That answer has changed over time, as you know. First of all, with even the most severe form of macular degeneration, this affects the central vision only, which—the difference between that—you use your peripheral vision less often, but when you’re not focused on something, you still see other parts in your vision, and that’s your peripheral vision, and that will always remain intact with even the most severe form of macular degeneration.  And the reason why this answer has changed over time, it was only as little—about 15 years ago, we had no treatments at all for wet macular degeneration, and the central part of the vision was something that we would expect for patients to lose, but now, over the past 10 years with research, and the treatments have changed dramatically, and what we can actually tell patients and have the expectations are that we hope to maintain good vision—and good vision including vision that’s capable for driving, for reading, and that’s the expectations that I would hope with early diagnosis.”
  • From https://www.secondopinion-tv.org/episode/macular-degeneration

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AMD & Autoimmune Disease – A Connection?

Hello, folks! Here we go again with a topic that is so far over my head I never should have even attempted it. Oh well, one of our readers asked the question. And besides, “a man’s reach should exceed his grasp or what is a heaven for?” (Robert Browning – and one of my favorite quotes😊)

So you have again been forewarned. I am slogging through medical research and I have no clue what 90% of what I am reading means. If you get confused, just consider who is doing the interpretation!

The question was: can AMD be considered an autoimmune disease?

The answer is probably, maybe. They are working on that now. Can I get back to you? Like next year, maybe?

I am sure we all remember the alternative pathway of the complementary immune system. 😱 From what I remember things this system deals with include inflammation and the release of macrophages (big eaters) to clean up the mess. Macrophages are sort of the carrion eaters of your body.

According to webMD inflammation is supposed to protect us from foreign substances. It occurs in response to chemicals and involves an increase of blood flow to the affected area. Fluid leaking into tissues can cause redness and swelling. Swelling can cause damage.

Autoimmune conditions occur when there is no foreign invader and the body starts to identify its own tissues as something foreign. Healthy tissues come under attack.

AMD is an inflammatory disease. It would make sense that with chronic inflammation, the signaling system could easily go awry and result in ‘friendly fire’ casualties. By my way of thinking, this might be even more likely because both inflammation and macrophages are part of the innate immune system. The defenses of the innate immune system deal with nonspecific targets.

Morohoski et al. wrote a paper on autoimmunity in retinal degeneration. He (she? It is K. Morohoski) states “a growing body of evidence indicates that AMD pathogenesis too involves ocular inflammation and autoimmunity.”

But it is not just inflammation and the complementary immune system they are now suspecting. Now they are even suspecting involvement of the adaptive immune system. That is the one in which defenses are ‘made to order’ as opposite to ‘one size fits all’. Think antibodies and developing resistance to a disease; that immune system.

Anyway, now they are thinking damage may cause a breakdown of the blood/ brain barrier – remember the eye is the only part of the brain you can see with the naked eye! – and antibodies may be released into the eye. Some of these are retinal autoantibodies. These are proteins that will attack the retina of the host.

So, in answer to the question: it seems reasonable AMD is an autoimmune disorder. It seems probably that not only is the non-specific, innate immunity system in the mix but the specific, adaptive immune system is involved as well. Is it written in stone? Nope? Are they ready to uncategorically declare AMD an autoimmune disorder? Not yet, but I would predict it is coming. Continue reading “AMD & Autoimmune Disease – A Connection?”

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Islands of Damage

I have got about 45 minutes before I need to get ready to walk and go to yoga. Had to go to my third job today, just for the half day. My husband took me up and did errands for the morning, then we went to lunch and picked up my framed photos for the contest in the fall. I am four months ahead of the game but I had to pay extra to get them done on time once before. Not doing that again.

Lin gave me an article entitled “The Journey of ‘Geographic Atrophy’ through Past, Present and Future”. Started reading it …finally… today. First thing I read is GA is ‘end stage’ dry AMD.

I knew it was advanced AMD but never gave a lot of thought to it being end stage. Does ‘end stage’ just mean the last stage or does it mean I have almost reached the end of the deterioration? Need to read on.

There is depigmentation of the cells This is a problem because it is the building up and depletion of pigment that allows us to see. In GA you can get to look in and see choroid blood vessels with no difficulty, as well.

I have seen images of my blood vessels in my choroid. Nothing between them and the camera. Essential, my choroid posed naked.😰

The article said seeing the degree of degeneration even with the new technology is difficult. That is apparently why my retinologist saw no change in my scans even though I was perceiving an increase in density of my left scotoma.

The article also said there is high variability in the location, number and shape of individual lesions. The makes sense considering my blurry spot is up and right when looking at the Amsler Grid and my ‘sweet spot’ for eccentric viewing is lower and a little to the left. In other words if I center my poor, wrecked fovea at 1 or 2 on the clock face, I can see things between 9 and 3, courtesy of my ‘sweet spot’. Other people are different, of course. Putting each fovea on the center of the Amsler grid and seeing what blurs out can help you chart your scotomata. Then, learn to work around them.

I am not sure if this is good or bad. Exception in a limited number of cases, the fovea is spared until the end. Does that mean I am actually more abnormal than I have always believed or does it mean I am at the end of the process? Dunno.

See why I feel like a mushroom???? Jeez. Need information here!

Geographic? It appears early researchers (and by ‘early’ I am referring to the 1970s! Research and discoveries are traveling at light speed and there is no reason to lose hope something else helpful will be discovered soon) thought the sharp demarcation of lesions like ours looked liked borders of islands and continents as drawn on a map. That is where geographical came from. We have islands of damage in seas of healthy tissue.

Ok. Gotta run. There is lots more in the article though. Will let you know. Continue reading “Islands of Damage”

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Cheap Entertainment

Just back from a walk with the Beastie Baby. This time I got to smell the honeysuckle and listen to the bees buzz. Spring in Central Pennsylvania. “Enjoy! Enjoy!” (Thank you to Manny Gordon for that quote!)

Lin got me another article on geographic atrophy and scotomata. I have not read it yet. I will let you know but right now I want to talk about floaters.

We had a yoga class outside in the middle of the afternoon. When I was in savasana (corpse pose or final rest in English. I like the Sanskrit much better!), I was watching my floater swim around in my eyeball. Hey, what can I say? I take my entertainment where I can find it!😋

I have been told that eventually most floaters settle to the bottom and just hang out there. However, when I am in yoga and doing all sorts of poses, mine gets riled up and ‘swims’, my floater is in my right eye and looks like a mosquito larva.

Or at least, after some deliberation, that is what I decided. Cheap entertainment. Sort of like lying in the grass and deciding what the clouds look like.

Floaters are one more delightful thing we develop as we get older. The gel in our eyes – the vitreous – separates. I had a chocolate pudding analogy before. Know how pudding separates into fluid and clumps of pudding when it has been in the fridge too long? Same basic idea. The floaters are the clumps.

I have had this particular floater for years. You probably have some ‘old friends’ in your eyes as well. However, if those old friends suddenly have a lot of company from other floaters, if you get flashes, if you get a curtain-like shadow (see photo to the left) or if peripheral vision starts going dark, get to your eye doctor stat. These are signs of serious retinal damage and need to be dealt with as soon as possible.

The Mayo Clinic page on eye floaters lists a series of questions for which you might want to have answers when you go to your doctor. They also list some possible treatments for floaters. Laser surgery is used infrequently due to the serious risks involved. The other possible treatment is a vitrectomy. That is not fun and games either.

If possible, the best and safest thing to do is to just put up with the floaters. Shake your head. Watch them float. Think what they remind you of. If nothing else, they are cheap entertainment. Continue reading “Cheap Entertainment”

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The Blind Spot – Part 2

Lin found about the best article on scotomata that I have seen thus far. It has some basic information. Stuff that I had inferred from other articles but had never been defined.

Scotomata are areas of vision loss surrounded by intact vision. Scotoma, as I said, is Greek for ‘darkness’. Again, not a happy thought.

A scotoma can be in one eye or two. It can be physiological. Everyone has a natural blind spot where your optic nerve is connected to the retina. We don’t realize it because our brain just fills in. No need to worry about physiological scotomata.

Scotomata can also be pathological. Because these are the result of a disease process, these are the ones we get to worry about.

Relative scotomata are the kind you can ‘see through’. You no longer have a full complement of cones but enough remain to sort of get the job done. I have relative scotomata in my eyes. Unfortunately, one of them probably just had a massive die off because it has gotten several shades darker.

When the scotomata go black you have something called absolute scotomata. Those are the areas in which the photoreceptors – in our case, cone cells – have pretty much all died.

A positive scotoma is one that is obvious to the owner of the eye. I KNOW – I am in fact positive! – I have blurry spots and I am aware one of them just darkened.

We had a comment from a reader who has a negative scotoma (maybe two). She wrote she quit driving when cars on the road would disappear and reappear. Her brain was ‘filling in’ the blank spot with a vision of an empty road.

Aren’t brains just amazing? Scary, but amazing. After all, that little trick could kill both the brain and its owner! (Or would that be its servant? Hmmmm….)

And that, my dears, is what I know about scotomata. Not much considering I am the ‘proud’ owner of two of them! Will they all progress to black? Dunno. I keep looking and asking and continuing to feel like a mushroom. You remember: keep me in the dark and feed me bullshit.

What I was told was it was not a conversion to wet. Reassuring but I never thought it was. I was told there was no obvious difference between my last OCT scan and this one. I guess that means the die off was not severely massive, only mildly massive (but I can still see the difference!!!).

I was also praised for being proactive with my vision care. Important for us all.

So, darkening of your scotomata apparently may occur. It probably means things are dying in there. That is my interpretation, though. I was told it was progression of the disease, but if you have a disease in which cells die, would not progressing be cells dying? Stands to reason; yes?

If you perceive a significant change in the density of your scotomata, call your doctor and go in for an OCT just to be on the safe side. Not much can be done for the progression of the dry, but on the off chance you are converting to wet, you need to catch it quickly.

Thus we end another ‘adventure’ in AMD. Anyone else having these problems? Sigh.

Continue reading “The Blind Spot – Part 2”

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The Blind Spot – Part 1

Tomorrow I go for another OCT scan. That is optical coherence tomography. It is the one you look at the cross and the machine goes click, click,click vertically and takes pretty pictures of your retina.

I think I told you I think the scotoma in my left eye is more opaque. I think it is called density but I cannot find any information on it.

I am not understanding why they don’t publish this stuff somewhere. How are you supposed to understand what is happening to you if there is no information?

I have been told AMD vision looks like gazing through glasses with Vaseline smeared on them. Nowhere have I heard things go black in the middle. However, my scotoma is darker and things are not ‘bleeding through’ as well. Is this natural progression of the disease?

I feel like a mushroom. Keep me in the dark and feed me bullshit.

Did a fair amount of research trying to find something on scotomata. That is the plural. Like stigma and stigmata; you know. Scotoma is Greek for darkness so that is not very encouraging.

There are several different types of scotomata. The one we with AMD have is a central scotoma but there are also ones that obliterate half the central visual field, hemianopic scotomata, and peripheral scotomata. Pareacentral scotomata are near the central vision. Bilateral scotomata occur as the result of a tumor impinging on the optic chiasm. This is all info from primehealthchannel.com

medical-dictionary.thefreedictionary.com talks about absolute scotomata in which the light perception is totally lost. There are a number of articles online that come up when you google AMD and absolute scotomata. It is obviously possible, therefore, for an absolute scotoma to be the ‘end of the line’ for macular degeneration. How delightful.

On a positive note, many of the articles that mention absolute scotomata are about teaching people how to use eccentric viewing. They are generally pretty positive about their results. Once again there is hope for navigating around this mess.

If somebody actually TELLS me something about what is happening, I will let you know. I, for one, do not think you need to be treated like mushrooms. In return, if you know the answer, let me in on the secret!

And in other news, I am going to go to Mom Prom! The person who first offered to get me there apparently ‘thought better’ of it and never firmed up the arrangements, but I have another offer. Not really upset at the first person but I think people need to be honest with themselves before they open their mouths. If they are not going to follow through, don’t volunteer!

I also got the invitation to speak at the summer camp for blind and visually impaired high school kids. No clue what I am going to say. These kids have more experience with vision loss than I have. Any suggestions?

Getting late. Talk to you later. Continue reading “The Blind Spot – Part 1”

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I Promise

Greetings! Beautiful day. Sunny but cold. 37 degrees Fahrenheit. My friend who is ever concerned about my welfare knew my husband had pumped up my bike tires and thought today would be perfect for me to join her in a bike ride. Yes, I want to ride, but it is 37 degrees! Whoa.

New washer came bright and early this morning. I am actually very glad to be able to get some laundry done. Classic example of not appreciating something until it is no longer there.

Which brings me to our vision and a problem I heard about the other week. At least one member has retinal scarring. If one person has it, I suspect others do as well. I tried to look it up online and there was surprisingly little. Everything I found turned me around to macular puckers and holes. They are obviously all related, but what I was looking for was scarring in particular. If you find any good info, please share. Maybe write a page😀.

According to WiseGeek, retinal scarring is exactly that, scar tissue on and under the retina. Small scars are not that big a deal. Our wonderful brains just sort of erase them. However, big ones make problems by giving us visual distortions and loss.

What types of distortions? According to WiseGeek the Amsler Grid may curve and/or parts of it may pull out of position. Reading can be just about impossible for people with large retinal scars.

Cause of retinal scarring can be pretty much anything that causes the retina to become inflamed. That would include injury, illness and wet AMD. Repeated inflammation leads to the potential of bigger scars and more vision loss.  [Lin/Linda here: I found an article that says “People can develop retinal scarring from severe myopia, ocular histoplasmosis syndrome, and wet age-related macular degeneration (AMD). Scarring results from inflammation, caused by irritation of the retina. Severe occurrences  can cause swelling of the retina, wrinkling of the surface tissue, or even retinal detachment.” The article also talks about research into a compound that may prevent scarring in the first place.]

You hear the cautionary note there? For you folks with wet, very few things are more important than keeping up with your treatments and preventing irritation to your retinas.

Repeat after me: “I promise I will get my treatments in a timely fashion. So help me God.” Now spit in your hand and virtually shake….yuck. Who came up with that spit in your hand business? Obviously knew nothing about viruses and bacteria.

Treatments for retinal scarring appear to be limited at this time, of course. Because the available treatments are invasive, often the first ‘treatment’ is watch and wait. Other treatments are vitrectomy and something called a membrane peel.

We talked about vitrectomies in the past. In that procedure the gel like substance in your eye is drained. That substance, the vitreous, has string-like things in it that can adhere to the macula and tug. These ‘tugs’ create puckers, holes and scars.

Epiretinal membrane peeling is described in an article by Hampton Roy. The title is, aptly, Epiretinal Membrane Treatment Management. My interpretation is that in a peel, the surgeon teases off the upper layer of the retina. Maybe like trying to take off just one cell layer of an onion? Roy goes into explanations on a few different types of peels. My assumption is their assumption is the scar will be mostly in the top layer and can be removed this way.

So now you know everything I think I know about retinal scarring and its treatment. Remember, I am not a doctor and you should assume I know nothing when it comes to pretty much anything. The great majority of what I think I know has come off the web. Always check with your doctor. Continue reading “I Promise”

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