Hi. I'm really writing this to see if any one has a similar story to me, as I've never met anyone with eyes like mine, and there must be similar eyes out there
I'm 37 and I've always had short sight, first glasses at 5, but I must have needed them before. My sight gets progressively more myopic and my current prescription is c. L. -22, R. -17. Due to the myopia my eyes are very stretched and I've had several related issues with the macular. 8 years ago I had a blood vessel grow through in the L, and was treated once with Avastin, which cleared up the blood, but I'm left with a scar in the centre of the vision. 3.5 years ago I had a retinal detachment in my R (whilst 8 months pregnant too!), and in May this year I had a liquid leakage in the R, which was treated with 3 injections of Eylea, which has so far put things back to normal.
What I find hard is that no one at the eye hospital can ever tell me what the future is for my eyes. When I was a kid the optician always said my sight would stop changing when I stopped growing, well I stopped growing a long time a go and my eyes are still getting worse.
Would really love to hear from any folks in a similar situation.
Rowan
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Rowan78
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I am so sorry to hear about your myopic macular condition.
The Macular Society have a 'factsheet' which gives you some more information about the condition; we also have some further information for people of working age.
We also have some support groups for younger 'working aged' people where you can meet others; some will no doubt have myopic macular degeneration.
If you would like to locate your nearest group and to get a copy of our 'Myopic factsheet' and some other useful information, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).
Hi, I am 23 yo and just like you I've been wearing thick glasses/contact lens thruought my years. Now, my ophtha told me that my retina and macula are weak. I am set to have laser photocoagulation tonight and also injection. I wish, doctors will find cure to our diseases. God bless you all, and don't stop dreaming and have faith.
I am 36 years and have the same problem. I have lost the central vision due to non treatment as specialists here in Malta told me that it will heal after a year... And after a year the damage was beyond repair. Now I'm experiencing AMD in my left eye for which I'm being treated.
I was told to test the amsler grid on a daily basis and I have regular appointments ( once a month) for follow up at hospital.
So nice to hear from someone in the same situation! I'm so sorry you didn't get the right treatment in Malta, glad they are taking it seriously now. I'm in Sweden where they seem pretty good with treatment, and for my first problem I was at Moorefields in London.
Thanks again
Hi Rowan, just wanted to send you a hug x it is hard coping with the uncertainty, something we all understand here though we may have a different condition. The Macular society are brilliant and I'm sure they will be able to help you. Good luck for the future x
Hi Rowan, sorry to hear of your experience. I went through a very tough time, following diagnosis about 18 months ago, like you, really needing to know what the future held.
After huge research efforts by me, the experts all say the same.
"Every case develops differently".
Even the director of the AREDS2 nutritional supplements program in America could not help.
So I made sure I had all the support helpline and Web contact details that I may need, in an easily accessible place; I check on the Amsler grid each week; I spoke to the Macular Society helpline people; I sponsored a Guide Dog Puppy and volunteered for any tasks they may have locally; I dreamed up alternative transport arrangements to do all the things I want to do in the future; I told my family and friends about the condition and how it will most likely progress.
I value each special moment with my family and friends, and make a special effort to commit the picture to memory at the time, so I can imagine it when I need to in the future.
Thanks so much David. Yes seems like every eye is so different so there's no predicting what will happen. I've been living with this for years, and normally don't think about it too much (or try not to). But the last leakage really scared me as one doctor told me they might not be able to do anything, and I thought, ahhh if this is my vision now I can't work, or do anything much. Luckily she was wrong. But it shook me up. ¨
Yes, any change does shake you up, as I guess we try to forget about it as long as we can.
I try to live by the advice I had, to "plan for the worst and hope for the best".
I had my first shock on diagnosis about 18 months ago, but one detritus pile in my left eye, that sits over the fovea, (the worst place it could be,) it decided to atrophy just 2 weeks ago, and now I have lost the ability to read anything but the first line on the Opticians chart, all in one go. I cannot see the numbers on the alarm clock with that eye anymore.
It shocked me so much that all this has happened so quickly, I am 57.
If the same happens in my right eyeas well I hate to think of the consequences.
Hi David, looks like you need a hug too ! I recognise your shock.
My husband, 59 now, had a retinal artery occlusion in his right eye about 15 years ago, over the course of a few hours he lost all usable sight in that eye. Nobody then knew what had happened, he had scans for brain tumour and heart problems, eventually they said we are guessing but think he had a migraine in his sleep and that had done it - he was given warfarin but then taken off it, and we worried for years , what about his good eye? Now we can see that it was an RAO (the artery damage meaning there was no treatment possible by the time he was seen which is a small comfort now given that he sees me having treatment for my branch retinal vein occlusion and I was feeling guilty!).
He has continued to work and drive as his other eye is good but does get the eye strain and headaches, reading is tiring and he would not be without his ipad so he can enlarge text (I use an ereader and also an android tablet for the same reason). Eventually, as you say, you learn to live with it and as each day goes by without the other eye affected one relaxes more. The mindset is key - we started off thinking "when, what if" which was so draining but eventually accepted what is and learned to live more in the moment. He has been an immense support to me in my own journey and its so good he knows what its like (I feel other people dont always believe when one says one cant see something as they cant see anything wrong in the eye from the outside!).
Anyway, as ive said before, dont let the worry of an unknown tomorrow spoil a good today (I dont always manage it !).
We laugh as his right eye and my left are affected so we have to always walk together so the good ones are on the outside ha ha x
You are so positive eyesright, I also have one good eye which I depend on and if I start thinking about what might happen I can panic big time!! Currently I am going every three months for check ups no injections any more as the leak behind the macula never goes away. So it was decided not to continue putting me through them for no gain.
However I have another check this Monday I do dread them especially trying to read the chart as I feel that I am struggling to read even the top lines. But then I am told that it is no worse than before. I have had a second opinion with the same results so I guess I am neurotic about it. Thankyou for your common sense it makes me realise that I need to count my blessings. x
It's very hard pinkperfection, we just have to do the best we can to have as happy a life as we can. I'm just about to ring my clinic as my left eye is definitely worse so hopefully they will inject again. My hubby is now blind and I have cancer but we have friends worse off than us!
I am so sorry to hear that eyesright, are you having treatment for the cancer? Yes we also have a number of friends who are having very difficult times. I guess it is to do with our age but as you say we have to try and make the best of things. I hope things will improve for you.
I'm much older than you, but I've also always been very short sighted with similar prescription to you and I was finding it difficult to cope even with contacts and glasses.
I developed wet macular about four years ago and was treated with Lucentis at Moorfields. After the first injection there was an immediate improvement. I was told that my macular was caused by myopia and was therefore easier to treat. I don't know if this is true. I've had no macular problems since.
However my eye sight was still a problem. I was a teacher and I couldn't recognise children or read whiteboards! Finally an optician suggested that I had lenses implanted (Same as cataract surgery but for different reason) and my life has changed. I can now travel abroad alone, read subtitles.... I'm angry that no optician suggested this as an option when it was clear that I was struggling to live normally. I gave up teaching.
(Equally I was never told that I could have had an operation for strabismus -I was just offered thicker and thicker prisms. I also had that operation last year).
Of course having the lens implant isn't going to solve the macular worry but perhaps having that operation might make life easier for you.
Good luck. I think we all find out that we're stronger than we think when faced with these terrifying problems
Wow, that' so interesting and exciting to hear! I've obviously ruled out laser, but I've never had anything suggested to me about implants. I've read a little about it but haven't thought much of it since no optician or eye hospital has ever mentioned it.
I loath my thick glasses, but really try not to be vain about it, and my contacts are never comfortable enough to wear for more than 5 hours. Even with them I also struggle to read if someone writes on a board at work, and forget about reading subtitles on the TV!
Did they say anything about what happens if your myopia gets worse, obviously the implants are not changeable if you need a higher prescription?? And is it a problem if you need an injection for some sort of macula problem?
Hi, I'm sorry to hear you can no longer work, that's something I assume I'll have to prepare myself for in the future. In the mean time I try to lead as normal life as possible.
Sorry I don't know about the long term implications . I was treated at Moorfields and all the departments were involved in the decision so i didn't question it. and to be honest I was in such a bad state that I don't remember half of what i was told.
I understood that my eyesight would no longer detreriorate but i can't be sure. No promises on macular. Obviously you need to research everything further, and get propere advice but if I'd know about this option I wold have paid for it privately years before. (as we both know the cost of high prescription glasses and contct lenses is astronomical)
This is from NHS website;
Lens implant surgery is a relatively new type of surgery for short-sightedness. It involves implanting an artificial lens into your eye through a small cut in your cornea.
The lenses are specially designed to help focus light more clearly on to the retina. They can be helpful in improving the vision of people with very severe short-sightedness or those who have difficulty wearing glasses or contact lenses.
Hi Rowan, I'm 47 with myopic cnv right eye. With lucentis treatment the eye is now dry and with only slight scarring. I had laser treatment to correct my short sight 13 years ago but think it masked that the myopia continued until my bleed. I only needed glasses for driving at this time. In my left eye I have epiretinal membrane & have a lot of photopsia going on so wary of retinal detachment. My twin sister had her first bleed at 34 & has limited vision in her other eye. I hope the lens implants are an option for you. My sis was refused lens treatment due to risks - should something go wrong she could lose the little sight she has left. I have to say though your post has given me a little hope.8 years! I'm only a year into my journey & still trying to get my head around it all! Wishing you all the best & keep in touch and let us know your progress. x
Very pleased to hear I've given you some hope I still work full time and try not to let my sight limit my life (for as long as that's possible). Best of luck.
I have high myopia and developed myopic macula deg. In my left eye. I am getting Lucentis treatments. I have had 20 injections or more and it is somewhat stable. The vision acruity is not so good. The doctor told me I have pathologic myopia and that the eyeball just keeps elongating. It can stop but when is the million dollar question. i try to take eye vitamins and read up on anything and everything pertaining to eyes. I truly understand your fears and frustration. It's definitely difficult without question! I hope the treatments help you and it is wonderful to have support of the people on this site. Best to you and a big hug.
Hi BasiRose , I, too, have pathological myopia. am only 23 and seeing distortions and floaters. I was set for eye injection, but it costs too much. beyond my capacity. I am really afraid that the bleeding will got worse and it will scar. As of now, I have no idea where I can ask for funding.
I like you have very high myopia, I had cataract surgery at the Moorfields two years ago, the lens I have are not standard NHS ones so we're quite expensive, but gave me really quite exceptional results, before my left eye was - 18.75, my right - 23.5. After surgery it was Left +0.5 and right -1.5, unfortunately due to my myopic macular degeneration my sight is now getting worse again, I can just about pick out the top three letters on the eye chart with my right eye, and with my left can get five and a bit lines, so left eye doing all the work. I now have a Dome Shaped Macular in my left eye. I was told that I would eventually lose my sight completely, that was ten years ago, so am lucky still to have it. I tried asking how long had I got with my right as there is nothing that can be done and was asked " how long is a piece of string?" I am 47, now, And that was tough to take but, have decided not to think about it and enjoy life. I took my husband to my last appointment so that he could understand exactly what the situation is. Having his support is essential. As for injections into my left as my consultant wants to treat this eye as Wet AMD I am trusting that this won't affect the lens implants. Hope this helps, and best of luck.
Thanks, it really helps a lot to hear about people with a similar condition to mine. I like your attitude of trying not to think about it too much and enjoy life. I tend to try do the same. Good luck with your injections!
I spoke to a private clinic today about lens implants, they won't do anything on "unhealthy/unstable" eyes, which is kind of what I expected them to say. They did tell me to speak to the eye hospital about implants though, as they will do it in some circumstances, so I'll speak to my doctor at my next check-up
Im not diagnosed with macular problem, but due my severe myopia, retinas are stretched. I lately was told that they wont do the implants. Im in the same, last times cant wear contacts longer than 4-5 hours.
It sounds very similar to what I have! They can never decide if I have a macular diagnosis, but due to short sightedness and stress on the back of the eye I get many of the same symptoms.
I have very blurred vision too. Been wearing glasses since Grade 1. I was hoping I could get lasik soon. I already had a check up on my retina and doc said it was fine. So fingers crossed.
I'm sorry to hear that the clinic didn't recommend the lens implant. I had three Lucentis injections, and then had regular check ups at Moorfields. It was about 18 months after the last injection that I had the operations (one eye at a time). As I said before the three departments at Moorfields who had treated me (macular/strabismus/ cataract for surgery (I had the start of cataracts but they were far too minor to have been operated on) all agreed that this was likely to be successful.
Of course as we all know everyone's eyes are different, but it might just be a case of waiting and hoping.
It seems that it is the opinion of the NHS that cataracts have to wait and mature before they can be operated This is not true. I had a small one only in my right eye but, the consultant I was under at the Moorfields did it privately, both eyes and no waiting , best money I have ever spent.
That is very interesting Blinkblues. I have lost my central vision in one eye due to myopic CNV even though I did not have a high myopic prescription -4.00 when I developed it - early signs of atrophy were diagnosed as Drusen of dry AMD and when the blood vessels started leaking, significant scarring occurred in weeks and 7 injections of Avastin and Lucentis were too late to improve my vision. Now my optometrist has explained the double vision and ghosting at distance in my 'good' eye is due to start of a fast growing cataract - prescription has gone from -5.25 to -7.00 in 6 months. I phoned my hospital eye clinic to report this and ask for an earlier appointment and was told by the nurse that They would not be interested in a cataract and I would have to be referred to the refraction clinic and would have to be placed on a long waiting list! My regular clinic appointment is this coming week and I will ask the consultant for an urgent referral to cataract clinic but if he is unwilling to do this, I will go privately (against my principles but I need good vision in one eye! If at all possible) . My very caring and attentive NHS consultant has gone to Australia for a year and he saw me monthly but now, I am on 3 monthly appointments and see someone different each time which is frustrating. so to cut a long story short, glad to hear that an op can be done at an early stage and I have researched the consultants from the hospital who also consult at the local private hospital if I need to go down that route. PS - does anyone else get fed up of hearing "but you still have peripheral vision" - that is no good for reading or shopping or driving or...
Well, further to the above - saw the registrar at eye clinic today who was extremely supportive, explained the risks of cataract surgery on a shortsighted eye and said we will monitor it for a year or so but that I would get a consultant to consultant referral and would not have a long wait when the time came to operate - as the increased prescription in my 'good' eye is mainly dealing well with my vision, best to leave well alone at the moment. she also told me that I have cataract on my 'bad' eye and that having a cataract growing in each eye, explains the problem with night vision, lights and glare. Came out of the clinic feeling better informed (despite reading loads online already!) and supported. also relieved that good eye is not showing signs of myopic macular degeneration.
Hello, I know it's a little late but I just came across this site. I literally know exactly what you are going through. I have been extremely nearsighted since childhood. It never stopped progressing. Then a year and a half ago, I began to notice that straight lines appeared wavy. I went to a RS and was told that it was PVD. Then two weeks later, I suddenly noted a big dark spot in my central vision out of my left eye. I was diagnosed with wet myopic macular degeneration (Cnv). I've had multiple Eylea injections and my vision is now stable but I developed macular edema in my right eye. I absolutely love my profession and at 35 feel that I have many more working years left. I am still very afraid. Not a day goes by, that I don't think about what could happen next. I now have great doctors but feel that my sense of safety is not the same.
Blessedeyes0511. I am with you. I too suddenly developed a blind spot last year and lines appeared wavy. I was told it would need to be monitored but not to be too worried. An appt 3 months later showed no change but then my vision deteriorated overnight 3 weeks later. At an emergency appt I was told to come back in 3 weeks and that I may need injections but after one week vision got even worse to where most of my central vision in one eye is hazy and I can only read the last letter on each line of the chart. I have now been diagnosed with myopic cnv and had my first Lucentis injection yesterday. I can't help thinking if I had insisted on something being done at the emergency appt I may have saved more of my vision. I could cope if I thought it would only happen to one eye but I will forever live in fear of it happening to the other eye. I am in my early 50s and work full time. I am trying to remain positive but I am scared.
Hi again cwc (just replied to your other post) - just wanted to send you a hug x The fear you feel is something we all understand on here. I too am mid 50s working and driving and desperate to keep being able to read. All I can offer you is a quote I saw today - "worry doesn't make tomorrow better, it just spoils today ".
Easier said than done I know but stress definitely affects bleeds and oedema so we need to find a way to let our worry go (also the feelings of "what if"). I have used counselling which I recommend also fun exercise to get the endorphins flowing.
What we go through after diagnosis is like a bereavement, so be kind to yourself as you would in those circumstances x
I can definitely relate to the bereavement. I feel sadness when I think of the joy in life I once had. I still plan things and try to live my life but I must say that I feel like Il just going through the motions. I'm going to therapy. Not on any medications but trying to cope.
Hugs x therapy helps me too. I personally will avoid meds if I can as you then have to get yourself off them and frankly got enough to deal with already lol.
I'm 2yrs down the line now and have come to a kind of peace with it, just the odd wobble . I love this forum, it's therapy in itself! When we try to help others we are also helping ourselves. X
Hi Blessedeyes0511. Thanks for your post. Hope you are well too. The injection was fine and I had no pain. Just a scratchy feeling for a day. The nurse who was at the Lucentis clinic was the same one who I had seen the week before. She was lovely and held my hand. I can't say I have noticed any improvement, though he did say it may take two weeks. I will be happy as long as it remains stable and in the one eye. Fingers crossed.
How many injections have you had? Did your vision improve or just stabilise?
Hello, I've had 16 injections. My vision went from R: 20/200 L: 20/80 to 20/25 bilaterally with minimal distortion. Within the past month I have developed increased fluid in my right eye but my acuities are still good.
That's a great improvement. Gives me hope. My vision is good at the moment (though slightly distorted by the couple of glasses of wine I have had - back from an evening out). It is good to know the injections can improve as well as stabilise.
Hi Rowan, May I know, how is your eyes back when you were 23 yo? would you give me some advice to cope up with this at this very young age. I am working and just started to build my career. No family yet (I mean, no husband and kids). Would you recommend any activities or med to slow down the progression? Thank you
Well I'm a bit similar 3 yrs ago I had these wavy lines in the l eye had a few weeks of tests and then 3 luesentis jabs which worked well the consultant was well happy. So no further treatment then on a follow up they noticed a hiccup straight in ist of 3 more jabs a small amount of wavy lines damage but I can live with this but like u they don't tell u anything. So like about 15 maths on I just had my l eye cataract done really good still got the wavy line thou. I was born with two types of cataracts so am mow about to have the 2md done in a weeks time. So on the post op I ask the nurse what it was I had cos I was told and.cnv.mow myopic degeneration. And she said I had M D. So
. I then asked will it go to the other eye she said the cells can multiply. Humm. I asked would I lose my sight and I got a stupid knowing grin. Not helpful at all so I got a list of question for the Dr on the 19/9 I suggest u do the same I must say my consultants great when he told me I had MD he explain it and I ask did I have amd he said no so I thought I had cnv but I realise I misheard he said not AGE RELATED. I also asked when he told me how pleased the ja s had been is the danger gone of losing my sight and he said yes yes yes. Won't forget that. I think it's good to remember they don't ever lie just don't elaborate enough. It's helped me talking to you I had a bad time worrying about this eye thing lately I do hope u get some of the eight answers like I hope to get soon
Hello, I'm a few weeks shy of my 1st anniversary with this diagnosis, myopic MD with CNV. A year ago my eyesight was great (with contacts 20/20), but right after July 4 (I'm in America) I saw a black spot. I got my first and only avastin injection 4 days later. My vision improved, but it's still far from perfect due to scarring. I went through the different stages of grief, I couldn't even eat. I cope better now, I expect it to happen again. I'm 40 and I don't want this to happen to my kids. Oh, yellow tinted glasses help disguise the distortion when I'm wearing my contacts. I can't go without them for more than a few minutes. Also, my myopia in my bad eye is about -9.
I’m exactly the same . Age 38 with -18 eyes . At 35 I had a bleed in my left eye which left a scar in the central vision thankfully my right eye covers it so I can continue a normal life but every day I live in fear that something will happen in my right eye and destroy my life .
I too was told by opticians that my eyes would stabilise by the age of 18 . Never happened... and still no cure . I really hope one day they learn how to do eye transplants
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