As I stated in the beginning, one of the ways I wanted to use this blog was to educate people about pathological myopia and myopic macular degeneration, and giving a general overview of the basics seems like a good place to start.
Note: I am not a doctor, nor do I have any medical training outside some very basic biology classes in high school and college, and they were never my strong points. Please do not use this website to diagnose yourself, it is strictly me speaking about my personal experiences with the addition of a bit of research. This article published in November 2017 by the American Academy of Ophthalmology was the primary resource I used for some of the more medical information in this post and if you are interested in reading in more detail, I strongly recommend it: Myopic Choroidal Neovascularization.
What is Myopic Macular Degeneration?
Myopic Macular Degeneration is a retinal disease that impacts the macula, the part of the eye which controls detailed and central vision. It is really a shortened way of describing the condition, which medically is known as myopic choroidal neovascularization, secondary to pathological myopia. That is a quite a mouthful though, so MMD it is. Myopic macular degeneration shares a lot of similarities with age-related macular degeneration (AMD) in terms of symptoms and treatment, but rather than being a result of getting older, it’s caused by the strain put on the retina in those who have an extreme form of near-sightedness. If you’ve never heard of MMD, you’re not alone – I did not know what it was until I was diagnosed. It only impacts about .035% of the US popular, and is slightly more common in women.
If you don’t have much time and want the simplified version, this video from the pharmaceutical company Novartis does a good job at providing a succinct overview of myopic choroidal neovascularization (CNV).
Cause of Myopic Macular Degeneration
As the name indicates, this condition affects people who suffer from a severe form of myopia, or near-sightedness, which is caused by the elongation of the eye. For those of you who may be wondering if your vision puts you in the category or someone who may be at risk of developing MMD, let’s take a look at the numbers.
If you have received a glasses or contact prescription from an optometrist or ophthalmologist in the past, the power of the lens needed to correct your visual acuity to 20/20 will be measured in a unit called diopters. The larger the number, the higher the strength of your prescription.
- Mild myopia includes powers up to -3.00 diopters (D)
- Moderate myopia, values of -3.00 to -6.00D
- High myopia is myopia over -6.00D
- Severe myopia is is myopia exceeding -10.00D
When a person reaches the point of having severe myopia, they are then at risk of developing what is known as degenerative myopia or pathological myopia (leading me to sometimes refer to myself as a pathological degenerate, but I also have an odd sense of humor). When I was diagnosed, my prescription was around -18 in my right eye, -22 in my left eye.
In pathological myopia, the retina and other layers at the back for the eye become so thin that the cells in the retina can die slowly. This leads to atrophy and a slow decline in central vision and increases the likelihood of cracks or tears in the retina. About 5% of people with pathological myopia will start to develop abnormal new blood vessels underneath the macula, and if those blood vessels begin to leak, a person will be diagnosed with myopic choroidal neovascularization/myopic macular degeneration.
Symptoms of Myopic Macular Degeneration
While age-related macular degeneration and myopic macular degeneration share a lot of similarities, the one of the differences I’ve learned about with regards to symptoms is that myopes (as my doctor calls us) experience two different types of bleeds.
Benign Bleeds
The strain on the retina caused by severe myopia can cause cracks in the retina, referred to as lacquer cracks due to their shape, and occur in approximately 5% of highly myopic individuals.
Occasionally small amounts of blood can get through these cracks, causing what appears in the vision to be a small shadowy area. Visually, it appears as the holes or blurring on the grids in the image at the top of this section, but rather than being in the most central part of my vision, they are typically slightly off-center. My doctor refers to these blood spots as benign or innocent bleeds because although they cause temporary disruption to my vision, they will eventually resolve themselves on their own without treatment and do not leave any lasting damage. They’re more annoying than anything, and occur in my vision quite frequently. I almost always have at least one benign bleed in my eye at a time. The farther away these shadows are from my central vision, the more confident I feel going into an appointment that it will be determined to be a benign bleed.
Active Bleeds
My doctor has termed the occurrence of choroidal neovascularization as an “active” bleed, since it occurs when the abnormal blood vessels growing under the macula have started to hemorrhage fluid into the eye. This causes large areas of distortion in my central vision, causing everything to look warped, as seen in the “curvy lines” grid in the image at the top of this section. This area of distortion will continue to grow and worsen until treatment is received, and as the fluid grows more dense, it can create a blind spot in the vision. Left untreated, the leakage from these blood vessels will continue to grow and increase the likelihood and size of scarring on the macula, leaving permanent damage to the vision.
Both active and benign bleeds are unpredictable; there are no indicators that one is oncoming until you start to notice changes in your vision, so as soon as something seems out of the ordinary, CALL YOUR DOCTOR. I have monthly appointments scheduled, and I’ll still call to have someone see me, even if I was just there a few days earlier.
Permanent Distortion
The scar tissue the develops on the macula both as a result of the retinal atrophy and growth of blood vessels caused by myopic CNV is the cause of the permanent distortion in central vision that significantly deteriorates vision in those with MMD. It decreases an individual’s visual acuity, which makes things such as reading, identifying faces and anything that requires seeing in detail more difficult. As the scarring and atrophy become more and more severe, that is when a person is at risk of becoming legally blind.
Light Sensitivity
One of more mild, but still impactful, symptoms of pathological myopia is photophobia, or an increased sensitivity to light. This both takes the form of being uncomfortable when confronted with bright lights and having difficulty adapting to changing light levels. Although it may not seem as significant as retinal bleeds or macular scarring, photophobia can still cause people to have to make drastic changes to their day-to-day living; in my case, I had to make the choice to no longer drive at night because of the difficulty I have with the headlights of other vehicles.
Treatment for Myopic Macular Degeneration
If you are squeamish, skip right on down to the next section, Long Term Prognosis.
Currently, the most common form of treatment for myopic macular degeneration is injecting one of three drugs directly into the eye: Lucentis, Eylea or Avastin. These drugs bind to the proteins that are responsible for the growth of abnormal blood vessels to slow and stop their growth. Depending on the severity of the bleed, injections may need to be administered several months in a row, but frequently for myopic CNV they can be cleared up after one injection. Prior to treatment, your doctor will numb your eye (mine uses a combination of drops and gels) so you will not feel anything aside from a slight amount of pressure. My doctor also uses a lot of betadine to help prevent any potential infection. In my personal experience, the stinging from the betadine is wayyy more unpleasant than the actual injection.
There is not currently any way to prevent the growth of these abnormal blood vessels or to reverse the scarring on the macula that they cause, which is why it so important to CALL YOUR DOCTOR if you notice any changes to your vision so they can treat you immediately, if necessary.
If you made it through reading about the treatment for MMD (and for anyone who made it to the end of this massively long post), congratulations! Here’s a pup-rito!
Long Term Prognosis
Unfortunately, this is the part of the post where I shrug a little bit. The injections used to treat CNV were only approved by the FDA 10-years ago. Combined with the limited number of people diagnosed with MMD and how unpredictable this condition can be, there’s no real timeline to determine “your visual acuity declines at a rate of X per year, and Y years after a diagnosis is when you may be considered legally blind.” Approximately 35% of individuals diagnosed with MMD in one eye will develop it in their other eye within an 8-year period; it took about 3.5 years for that to happen to me. I happen to have a fairly active form of myopic macular degeneration and will have an active bleed every couple months; I’ve spoken with some people who go years between occurrences. It’s true about all things in life, but this is definitely a condition where everyone is different and why I consider it to be so important to find a retina specialist that you trust is giving you the best care possible and continually informing you about the prognosis of your condition and any new forms of treatment that may be available along the way.
Currently, there are a number of clinical trials in progress to find a way to reverse the visual distortion caused by scarring on the macula, and several of them have had encouraging results. I remain hopeful that during my lifetime treatment will be available to either reverse the vision loss caused by macular scarring or to prevent active bleeds before they happen.
Leave me a note in the comments or send me an email and let me know any aspects of myopic macular degeneration or how I live with it you’d like to know more about! I have a few things in mind for future posts relating to it, but I’d love to know if there is anything specifically you want to know!
15 Comments
Hey Theresa! You are adorable. I think we will be very good friends.
My mom had thick glasses her whole life and only until she had a surgery or two was she able to see better. She did have macular degeneration too but technology wasn’t available yet. We actually thought she looked great with glasses.
I cannot wait to play the movie game of “Kevin Bacon” with you. Though I’m better at movies made before 1950.
Thanks for commenting! Whenever I get frustrated, I do try to keep reminding myself that I am fortunate to have been diagnosed after a treatment had been developed, since I know the condition progressed so much more quickly before then.
And I’ve watched my fair share of early movies, although typically for the black and white ones I’m not as sharp with remembering actors names, just recognizing what other characters they’ve played.
So happy to have you here reading along and chatting with me!
Hi! I was diagnosed about 5 years ago with pathological myopia around age 30. It was initially just the atrophy and lacquer cracks, which made my vision less correctable. Then about 3 years ago I experienced bilateral CNV about 1 week apart. Did the suggested 3 shot course and CNV reoccurred about 4 months after my last shot. Since then they set me on a course extending 2-4 weeks at a time. This January I had very significant bilateral CNV recurrence 10 weeks post injections. I had had small ones here and there.
Now my new schedule is 2 months indefinitely because the medication doesn’t work as well as they hoped. However, I’ve been switched from Avastin to Eylea because it had better long term outcomes. They were the same at one year, but Eylea had a lesser rate of recurrence 2 years out. It’s a relatively new published study. But I’m kind of hopeful.
My myopia is continuing to worsen rather rapidly though, and it just makes it all worse.
I do find it interesting that most people I’ve read about or talked to have prescriptions quite a bit stronger than mine. I think my worse eye was at about -12 when I got CNV the first time. It just shows how variable it is in each person I think!
Its always nice to read about others experiences because it’s rare to come across. My doctor is in a major metro area, and it’s a large eye clinic, but I’m the only person with this they are treating(they have AMD patients though). My ophthalmologist hadn’t even seen it before in person. I don’t think my retina doctor had eyether! 😉
Well it’s been a few years since this article, and I hope things have been good for you. Or at least as good as they can be.
Thanks for sharing your blog on Facebook! You and P have completely different retinal diseases…but the similarities in your journeys are comforting. Thank you for sharing yours. 💚💚
This is really a very helpful article for me. i am 25 and was diagnosed with myopic macular degeneration about 3 years ago. At first, it affected my right eye but now I have MMD in both the eyes. It’s really very frustrating because of the dearth of information on the topic and also because of the uncertainty that any time bleeding may occur. Hopefully there will be a better treatment available in near future. Thankyoh very much for the article. Please keep up updated.
Hi Theresa. Thank you for creating this blog. I’m another fellow degenerative “myope”. I’m 45, -21 both eyes plus a little astigmatism in the right one. I’ve recently been told I have posterior staphylomas and lacquer cracks in both eyes with significant choroidal thinning in the right eye. I haven’t had any CNV yet in either eye but with these recent findings I know it’s only a matter of time…:(
I see you mention what your eyes are currently correctable to but I’m wondering what your eyes were correctable to before your first CNV episode? Do you feel the anti-VEGF shots are helping to stabilize your vision?
I am hiigh myopic with – 17 in my right eye & – 15 in my left eye.I had an retinal detachment in my right eye & had surgery & been left with submacular scaring which makes everything look distorted & my right eye was my independent eye.Which I had myopic Cnv & was assaulted & which lead to submacular hamrioge.I had 3 injections & I had 2 retinal tears which I had laser surgery.But now I have submacular scaring in both eyes & been registered partially blind.Whicj I have lost my driving independence & I have lost my employment as I was driving for a living.I have done a lot of research for submacular scaring remedy.Bit there is no cure in the world.I hope during my life time they find a cure.As I have little children who have lost father who was full of life & independent.
My name is Naveed ul haq I live in the uk.I was diognosed with myopia from the age of 8 as I couldn’t take the sun light & my father notified my teacher & my I teacher referred me for an eye test & I started wearing glasses.During my teenage days my prescription got worse every year.By the time I was 17 I was -17 in my right eye & – 15 in my left eye which was very worrying & embracing with coke bottle glasses.So when I started college I started wearing control lenses which gave me a lot of confidence.As I got to my twenties my eye sight deteriorated.So from soft lenses i started wearing gas permeable lenses which improved my eyesight
& I passed my driving I gave me a lot of freedom & independents.By the time I was 25 yeas of age I had an retinal detachment .I went to spec savers & the opticians advised it was an allergic reaction & gave me some eye drops & told me to come back after 4 weeks.When I went back after 4 weeks they told me it was a retinal detachment and referred me to the eye hospital.Which I had to go through an eye surgery and was left with submacular scaring & was advised that I have lost my central vision.After that I had one independent eye which gave me my freedom.As I got older to my age of 43 my left eye became cloudy & was diognosed with a catract.So me and my Opthamolist decided to have an AOL implant.Whilst waiting for surgery my Good eye became blood shot red I thought it was my contact lenses After 2 days I was assaulted & thrown down some stairs which caused a submacular hamrioge and Opthamolist advised me that you had myopic macular degeneration & the assault made it worst.So he said you have an retinal tear which we will laser together & you need to have 3 lucentis injections but you a submacular scar right in the middle of my macular and registered me partially blind.So I lost my job and my driving independence.Which lead me with severe PTSD and clinical depression.The reason being as I was advised that there is no cure for submacular scaring in the world so I lost all hope.As I was the father to 3 children and a bother to 2 disabled brothers & an old vulnerable mother who all were dependent on me.So my children lost the independent father full of life.Is there any one out there In the sane position as me please and will they ever find a cure for submacular scaring ?
Hi, theresa, i was recently diagnosed with mmd, if this worsens, can it leave you with total blindness?
Iliza I have read your blog that you have been diognosed with MMD.Sorry to hear about you been diognosed with MMD.I have had a lot of experience on severe myopia and retinal changes.As long as your MMD has been diognosed at an early stage with out it leading to a submacular hamrioge .One lucentis injection will stop the bleed which shouldn’t lead to submacular scaring.Which causes distorted vision with a submacular scar.I shouldn’t really worry a bout it to much,Visit a Opthamolist straight away for treatment.
Hi Theresa I have a 23 year old daughter with special needs that’s as recently been diagnosed with degenerative myopia in her left eye. Very myopic -25 in right eye -27.5 in left eye. Right now the dr is taking a “wait and see” attitude; visits every six months. Have you and others here gotten that response?. I read about injections to slow things down much like you have
Are we being put off because the inevitability is blindness..
Hi Theresa, I’ve been dealing with myopic degeneration for several years now, had many injections etc., but a week ago I experienced what I thought was a blind spot. I never had one of these before so I did go to my retina doctor and started the injections again. I came across this page of yours and, based on your pictures, I’m hoping I have blurring and not a blind spot. What I’m seeing is definitely a gray spot and not a black spot. Sometimes I think I can see through it, but I’m not sure if I can or if it’s my mind playing gestalt tricks on me. Your blog has cheered me up a little hoping that this blur spot, if that’s truly what it is, may go away so thank you for that.
Hello Theresa. I have high myopia in both eyes. I have had benign bleeding in the left eye infrequently (Thank God) over the past 30 years. Probably about 5 total. I see my ophthalmologist once a year for a checkup. My question is…How do you stay so upbeat and positive. You obviously have had much more issues than I and yet you can stay so upbeat. You are my hero. I have become very depressed and fearful over my condition. I have had to be on Paxil to help me cope with my constant terror of going blind. The myopia has finally affected me so psychologically that I have become reclusive. What do you do to stay so positive and do you take any special vitamins that may help stave off any new damage ? Thank you for reading my lengthy text. Take care and thanks for sharing your story !!
Chris Mayher
Hello, Thanks for sharing such an informational blog.
One night I sneezed and blew blood vessels which I guess distorts my vision similarly to you folks . I hope a cure comes quickly for all of us. The injections have helped but very little . GOOD LUCK TO ALL