Myopic Macular Degeneration

by Colm
(Ireland)

I was born short-sighted (-5.0). Never much of a problem, I needed glasses whilst young and wore contact lenses when in my teens. I never thought about my eyesight as being under threat. I just thought that I was short-sighted- a pain but not a problem.


In my mid 40s now - 18 months ago I noticed distortion in my right eye - I went to the optician who said it was post vitreous detachment (PVD) never worry about it - "it will go away".

6 months later I noticed the same distortion in my left eye- I went to the optician expecting the same diagnosis. Then like a slap on the face the optician say you have a eye disease and need to see the eye consultant straight away.

Three weeks of tests, waiting, results, waiting, treatment, finally!

In the three weeks I had lost basically all my centre vision - every day it got progressively worst. I was going blind - and nothing was being done about it. The internet was little comfort as I ever increased the font to read. I stared at pictures of the kids burning the faces into my mind so I would never forget. I put together the kids Christmas presents whilst I could. My hand in front of my face had turned into a pink webbed flipper. I was never so low.

Lucentis treatment followed - two injections in both eyes. The fluid behind the eyes dissipated and I was left with scars on the retina. But the vision returned - I can do all things normal - thank God. A little distortion and a stronger prescription but my vision is fine. Consultant doesn’t expect it to return.

I have an every day (almost) diet of prayer, greens (kale and spinach), vitamins, fish and antioxidants. All these help me believe that he is right. I train at the gym regularly - trying to keep as healthy as possible. 10 months now so far so good.

If the vision stays like this I will have a full and normal life. If the disease returns - then I have had the chance to get use to it.

The future is bright I believe - cures are only a few years away.

Poor eyesight doesn’t make me less of a person I have come to realise, only if I let it.

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Jul 31, 2017
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My Life With Myopic Macular Degeneration
by: Lyda

I've had very poor vision since I started Kindergarten. I couldn't read the black board and that's when my mom first realized how poor my vision was. from age six, I wore coke bottle glasses. I was always the youngest patient of every eye doctor with the worst vision. It's something I got used too.

Then when I was 36, I woke up one morning and put my contacts in to get ready for work. I was alarmed and the fact that every straight edge, like tables and counter tops had a curve in the middle of it. I got an appointment with my eye doctor right away. She could not figure out what was wrong and sent me to a retina specialist. The retina specialist did a extensive exam and found that the retina in my left eye was bleeding. i was scheduled for laser surgery the next morning. At that time, the injections weren't even available. I was diagnosed with the wet form of myopic degeneration in my left eye and the dry form in my right eye. I had three laser surgeries to seal up the vessels that were bleeding in my left eye. But it was still too late to restore the central vision and now I have no retina at all in that eye due to all the bleeding.

I have the dry form of myopic degeneration in my right eye. I've had two laser surgeries in that eye to seal up retinal tears.

My good eye does all my seeing and I am very thankful. I can no longer drive at night but am still able to drive during the day and I work full time.

It's been sixteen years since I was first diagnosed and so far the vision in my good eye has been good. I wear soft contact lenses and live a very full life. Of course there is always the fear that one day my good eye will turn from the dry form to the wet form and then my central vision will quickly be gone. But I try not to live in fear. I hold on to the hope that a cure will be found. I don't regret going through this disease. It has taught me to cherish little things and to be grateful that I still have one good eye. It has taught me to never to take for granted all the things I can do and if one day I completely loose my sight, at least I have had years to prepare. I encourage anyone who has this disease to stay strong and know that all hope is not lost and you can still enjoy your life.


Oct 24, 2011
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I've Got Myopic Macular Degeneration Too
by: Chris

Thank you for your story. I got diagnosed with Myopic Macular Degeneration last week. I was working on my computer for long hours.

I felt so tired and could not focus. I saw my regular optometrist. She showed me the Amsler Grid.

I could see the wavy line close to my front vision on my left eye. I am scared right now but I try to be strong. I have not told anyone yet.

I am just 37 yrs old with two very young children. I hope to see (literally) my children to grow. I have got to see a retinal specialist since I have HMO and my regular optometrist has not recommended one. She is going to test whether I have wet macular degeneration or not.

Do you know any good retinal specialist around Southern California? I think I should go see a retinal specialist even it is out of pocket. I am very scared right now.

REPLY

Hi Chris,

I am sorry to hear about your diagnosis of myopic macular degeneration.

The two organizations that offer lists of retina specialists are the American Academy of Retina Specialists and the American Academy of Ophthalmology.

Go tot his link and scroll to the bottom of the page and you will find links to both of these organizations.

All the Best,

Leslie

Retina Doctor

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32 yr old Energetic Artist - Myopic Macular Degeneration

by Megan
(Cream Ridge, NJ, USA)

Well, let's start off with my life. I've never taken my eyes for granted, enjoying every beautiful sight there is to see on a daily basis.

Six years old was when I had been given my first pair of glasses and was told my eye sight would level off in my mid-twenties. Well, needless to say, I'm still waiting for that.

When I was thirteen I knew I wanted to be a professional artist and enrolled in adult oil painting classes, I love every kind of artistic outlet there is, but painting has always been my first passion.

In high school I was accepted into a program at a community college to experience art school. I had a terrific time & actually enrolled in the fall of 1997. Each semester I took between 18-21 credits, filling my life up with a ton of wonderful new knowledge about my up & coming career in the art world.

Just a month away from graduation, my son was born. So everything was put on hold until he & his little brother were in school. By that time I raised them by myself with little help from family & friends.

So in the fall of 2007, I enrolled in a beautiful university to finish my Bachelors of Fine Arts Degree & K-12 teacher certification. I was so excited at a bright future. Of course there was always freelance artwork to do, and scarves to knit for the kids. But an important aspect that has been just as important as art, has been my love of reading. I'm never caught without a book. My first job had been in the local library.

Summer of 2012 rolls in with an interesting a few surprises, and Labor Day approaches with a much needed BBQ w/ the kids. But as I'm at the grocery store, a forty minute ride from home, I notice my right lens must be smeared, because I can't see through it. After cleaning it off and loading the truck, I asked my son if anything was in my eye.

I started to really worry, thinking maybe my allergies were acting up or I got something in it. I was having a very difficult time driving home and had no one to call for help.

After a tense 45 minute ride home, I showered thinking I could wash away whatever was wrong. I'm only 32 and couldn't imagine what I'd done to have this happen so suddenly, but then after recalling a conversation w/ my optometrist a few years prior. I remembered he said because of my high myopia, I could have a retina tear.

So, of course being on Labor Day, my primary & optometrist were enjoying time off, and I drove to the local ER to get checked out. After 6 hours and no available optometrist there either, I was sent home.

There were horrible visions that kept going through my mind of things that could happen until I received help. The following morning I went in to be told by my optometrist that I had blood in the back of my eye & needed to see a retina specialist ASAP.

So, two days after this started, I was in the retina specialists chair when tests were completed & he told me my right eye had wet macular degeneration caused by my myopia. Maybe my vision would improve, but I'd come back in a few weeks & be rechecked. Would this happen in my other eye?

I felt like I was sucker punched. I couldn't understand what to think or tell my kids. They had started school and I couldn't even see to fill out the yearly paperwork that comes with it. Work was out of the question.

I was dizzy from the visual changes and bumping into the walls & chairs. No lifting meant I had to rely on the little help the kids would give me. No driving meant a depending for rides to the store. I couldn't work on art or read.

By the time the second visit rolled around, I felt like my eye had improve alot, but wasn't perfect. Miracles do happen, I was told the bleeding had stopped and was healed, with only the laquer cracks showing. In another few weeks I'll be rechecked.

I certainly feel very blessed that this healing occurred, and do realize it can happen again. But now, I'm much more prepared for the challenges to face when it does. And yes, I still have a spare eye to use and the ability to adapt when it does so I can still enjoy things I do.

It all depends on your reaction to this eye condition. Things can be overcome, with time and patience you can live a life that is full.

Currently, I'm back to reading, knitting scarves, enjoying the fall colors and just having a good time with my kids.

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Feb 04, 2014
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Update
by: Megan

Well alot has happened since the first post. 6 months after my first retinal bleed, my other eye had the same thing.

I noticed on Memorial Day immediately after mopping the kitchen. I no longer am able to drive at night, I lost all of my night vision, detail work suffers greatly as does finding someone while shopping in a store.

I'm more careful about what I pick up, and bending over. I have had two concussions since & many knocks on the head, trips, etc. I've been using audio books to "read now", it takes the strain off my eyes. I still have the waviness, distortion & need large font on the computer.

I find that using a large TV hooked to the computer helps some. Just take things one day at a time and go from there is all I can recommend.

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Myopic Macular Degeneration

by Susan
(St. Louis)

I have been myopic nearly my whole life. I started wearing glasses in the first grade and have had to upgrade my prescription nearly every year.

I wore hard contact lenses from the time I was 12 years old until my early thirties. Initially, the optometrist believed hard lenses would slow the progression of myopia through my growing years.

It did not. In my early thirties, I switched to soft lenses for comfort, giving up some clarity that the hard lenses offered. Within a few months, my vision changed drastically: 4 diopters.

My optometrist thought it was interesting that by changing the lens from hard to soft that my natural lens changed. I was horrified. I hoped that would be the end of my vision changes, but they continued. I currently have a glasses prescription of - 17 diopters.

Optometrists and ophthalmologists often warned me of the symptoms of detached retina: floaters and flashes of light, but never mentioned macular degeneration.

I first learned of macular degeneration November 2009. I had noticed that my left eye was not seeing well and had intended to make an appointment after the Thanksgiving holiday. I thought that maybe my prescription needed to be updated, or perhaps like my older sister, I was showing signs of cataracts.

Just before Thanksgiving I noticed vertical lines, like door frames, did not appear straight. I was getting concerned but I had a house full of company. By the time I saw an optometrist the following Monday, I could only see a corner of the big letter E on the eye chart. The optometrist mentioned that I might have choroidal neovascularization and recommended a retinal specialist.

I had no idea what he was talking about. After doing some research on the internet, I found out it was macular degeneration. I watched the video showing the progression of the disease and the loss of central vision. I was devastated: I knew I was going blind.

To make matters worse, my husband was leaving the country for two weeks and I was going to have to rely on neighbors I barely knew to get me to my next eye appointment. Two months earlier we had just returned to the US after an extended stay in Europe and I was hoping to find a job and continue my career as an engineer.

I saw a retinal specialist on Friday of the same week who gave me the fluorescein angiogram, OCT to confirm I had wet macular degeneration in the left eye and dry macular degeneration in the right.

He told me my symptoms were like age related macular degeneration, but the cause was the elongation of the eye (myopia) resulting in the thinning of the choroid layer.

I received my first injection of Avastin that day. I received 3 more injections every six weeks with increasing improvement in my left eye. I could see 20/40 on the chart again but there was still distortion and haziness.

Eight weeks after my fourth injection I had more leakage and reduced vision 20/400. My specialist tried 3 more injections of Avastin with only moderate success.

Hoping to get better results we tried Lucentis: eight injections at four week intervals. After no noticeable improvement, my doctor changed back to Avastin. During this time, my eye was regularly tested with the flourescein angiogram because the leakage was continuing.

My vision is now 20/40 in my left eye but there is scarring, some distortion, and only the smallest window of clarity. I can only see one letter at a time on the eye chart. My right eye does most of the work for reading and driving.

During this time I have had more floaters develop in the good? eye that are large enough to prevent me from clearly seeing faces, road signs, or printed material for two to three long blurry seconds. It was very scary to drive for months after the right eye became unreliable because of the floaters.

Night driving has become increasingly difficult. I only feel comfortable driving at night within a few miles from my home. I also avoid driving in city traffic and take frequent breaks if driving for long periods of time. Limited driving has limited my ability to find a professional job.

We live in suburban area and to reach the city and employment opportunities I would have to drive a heavily traveled interstate. I currently have a retail job a few miles from my home that pays slightly better than an hourly wage. Giving up my career and the financial impact to my family has been the hardest part.

Now I am 51 years old and I wonder how long? What next? I find it ironic that I have worked hard to eat right, exercise, and watch my weight so that I beat the family history of obesity, heart disease, and diabetes and to be able live a long active life. Now myopic macular degeneration is changing my future.

It has been a lonely road. No one truly understands your fear, the pain of the injections, and day-to-day frustrations of just trying to see.

I am an avid reader of WebRN-MacularDegeneration.com website. It has been an invaluable source of information and comfort to know that I am not alone. I am trying to follow the macular degeneration diet, take the AREDS 2 vitamins, and stay up-to-date with all new developments, as well as prepare for more vision loss in the future.

I have stopped crying and worrying over the future. I thank God each day for the gift of sight and try my best to appreciate all that I have. I laugh at some of my misperceptions from my blurred visions or poor field perception.

I drive with more deliberation, care, and greater stopping distance to make up for my lack of depth perception and blurred seconds of vision.

I have found large print books at the library (a real treasure) and read regular print with a really bright light! I am still hoping some career opportunity will come my way, but until then I'll stop and smell the roses.

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Mar 16, 2017
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Living low vision
by: Dan

I too was born with severe myopia and yes I wore coke bottle bottom glasses. I was ecstatic when I could finally be fitted with gas permeable contacts in my mid twenties. I always struggled to get a driver's license. The onset of MD started in my early forties and now in my early sixties I try to hold on to anything I can do responsibly. The hardest though is maintaining social contacts gently letting the world know what low vision / blindness is.

Feb 28, 2017
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Just Diagnosed with Myopic Degeneration
by: Deanna

I was recently diagnosed with myopic degeneration. I'm so scared about my future. I am 44 and have a son in high school.

Right now my vision is -10 in one eye and -11.5 in the other. My vision correctable for now (I wear soft contact), Dr said I'm in the pre stage whatever that is. i do have one large floater in my right eye and some small ones in my left, but I can live with it. I try not to drive at night unless it's a familiar area and well light since my night vision is pretty bad.

I fear waking up to find vision decreased and hoping I can continue working for a long time.

I have an appointment with a specialist next month, so hoping for more answers.

Can anyone say how many years they've had the degeneration without much changes?

Dec 23, 2016
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My Eye Story
by: Debbie

So glad to have found this page. There doesn't seem to be much support online for high myopic like us. I have been high myopic since birth. At age 2 my mother noticed I wasn't excited by the Christmas tree so she took me to the eye doctor. Her father had recently lost his vision to retinal detachments, so I'm sure she was very concerned. I was fitted with glasses, which I refused to take off at bedtime. I could finally see and I didn't want that taken away! Of course, I would lose them overnight and wake up crying because I couldn't see again.

My right eye was too myopic to correct with the thickest of glasses so I've always only used my left eye. I remember at 16 the eye doctor mentioning that I had macular degeneration and that I may one day have a detached retina. It never concerned me. I just went on living my life. I was an artist and loved riding my horse.

I got married and at age 23 I fell off my horse and hit my head, and broke my ankle. Six weeks later I got my cast off but I noticed my right eye was blurrier than usual. That night I noticed a bubble of light. I knew these were signs of detachment, so off to the doctor I went. Four grueling surgeries later the retina was still detached and I was left with a now crooked blind eye.

The vision in my good eye slowly got more myopic every year, down to -22. I was and still am my opthamoligist's more myopic patient. All went well with the birth of 4 children. Then at age 36 I saw the all too familiar signs appear in my left eye. I was whisked off to surgery and thankfully they were able to repair this detachment.

I lost some peripheral vision due to the scleral buckle they put on my eye, but otherwise my vision was 2p/20 with correction.

When I was 59 I underwent cataract surgery. My doctor put it off as long as possible because of the risk of detachment reoccurring. What an amazing feeling it was to wake up in the morning and be able to see without my glasses! My vision was 20/25 without glasses. It was like a miracle! The myopia has gotten slightly worse since then, but pretty stable.

I did worse on a visual field test last year and my pressure was on the low end of high, so my doctor put me on glaucoma drops. My night vision has gotten much worse and I need bright light to see well. I've stopped reading regular books and now read on a tablet..thank heaven for the technology!

Fast forward to last September. I just turned 64 and noticed a small blind spot, like someone put WhiteOut over part of a word, and lines on the side of the road were all wavy. I was sent to a retinal specialist and diagnosed with overgrowth of blood vessels in my retina.

I started receiving injections of Eyelea that day. I'm thankful the condition has improved and stabilized for now. I may only need the injections for a year. Currently I am still employed and driving, very carefully though. Taking one day at a time and thankful for every day of continued sight.

Oct 30, 2016
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Not Alone
by: Billy

Dear Susan

I just turned 50 this past week and celebrated my birthday in post op from cataract surgery. I like you am a very high myope since birth.

Currently I'm approx a -21D with 32mm eyes (normal is approx 23mm) very long eyes and just to make it fun I have bilateral keratakonus & astigmatism

My cataract surgery was the result of having a recent vitrectomy to remove a massive amount of floaters caused by a PVD 8 years earlier.

I'm a single dad and I worry everyday how I'm going to care for my daughter if I lose my sight. I feel your pain and know what you are going through, you're not alone we're not alone. We just have to believe that there is hope and keep fighting the good fight, it's all we can do

I want my legacy to my child that no matter what, never give up !

Good Luck $ God Be With You
Bully

Oct 24, 2016
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My Visual Path
by: Anonymous

I was severely myopic as a small child. I got a gnat in an eye and went to see an eye doctor. He set me up with glasses. As I learned to read my vision kept getting worse. I remember new glasses every 6 months.

At 18 I got hard contacts. I had always read a lot. I became an Engineer. Neither helped my eyes. My vision stabilized for 12 years. I tried soft contacts and found my vision swinging dramatically. I got new contacts, now RGP. I was about 30. My correction was 12.5 diopters (r), 16 (l).

At 40 I had a stroke following a long surgery. I lost control over the ciliary muscles around my left eye >30 diopters double vision! I went to a vision therapist and retrained those muscles and regained single vision with depth perception.

At about 50 I had a series of retinal tears and detachments. After repeated vitreoctomies I eventually lost the right eye. The left had many tears with huge twisted strands of black floaters like looking through the branches of a dead tree in a high wind. My retinal specialist finally replaced the vitreous fluid with saline and my vision got MUCH better. No more floaters!

About 7 years ago I got hurt, took too many ibuprofen. I had several retinal hemmhorages and Amslers got wavy. Sometime after that I developed a small macular hole in the left eye. It'really not repairable. Now I'm 64. My Doctor's seeing myopic changes, so I've got myopic degeneration. So far I can still drive but I stopped driving at night long ago. I am taking Visivite 2 supplements, have resumed vision therapy to relax my ciliary muscles. I listen to recorded books. I've been playing with virtual reality to relax my eye. What little reading I do is high visibility/large font. I have a small support group of others with visual problems. I've taught myself to navigate my house without vision, open the front door etc. We remodeled our kitchen. It's now white and very well lit (leds). I too hope for stem cell advances. It's been a long road. It's often been pretty scary. It still is.

Dec 10, 2014
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My Eyes
by: Anonymous

I have had glasses since I was 5. My glasses prescription is -22, and -18.75. Thank God I can wear contacts because I can see better out of them. I am a graphic designer/illustrator so I need my eyes.

I was diagnosed about 7 years ago with myopic degeneration after seeing waving lines. I have had a few shots of Avastin over the years. I find my sensitivity to light is worsened as well as night driving. If it is raining at night I try to avoid driving.

Dec 04, 2013
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Myopic macular degeneration mainly in right eye
by: Anonymous

This has not been a easy road and there is nothing out there to help us. I feel stem cell is our only answer.

I hope to see my children's faces for a long time until they find a cure for us.


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