Myopic CNV Success Stories?: Hi all, I am... - Macular Society

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Myopic CNV Success Stories?

ukmyope
ukmyope

Hi all, I am new here and seeking some support & inspiration. I am a high myope (-10 &-12) and nearly 3 years ago, aged 41, was diagnosed with cnv in the left eye. This was treated with 2 injections of Lucentis, resolved well and remains stable. Now, aged 44, I have developed cnv in the right eye, which is currently being treated with Lucentis. The consultant tells me that the rest of the retina looks relatively OK for a high myope, with the RPE having healed well in the left eye. Although he has tried to be encouraging about my prognosis, I have read the scientific literature and am all too aware that having myopic cnv in both eyes at my age is not great... I am also concerned about macular atrophy, not least as I have lacquer cracks in both eyes.

Being online has proved largely very depressing and although I am trying to stay positive and be grateful to have access to anti-VEGF injections, I cannot help but worry and feel depressed about the future. My job relies heavily on being able to use my eyes, and I have young children. Does anyone have any success stories, their own or other people's (e.g. long-term stability, retinas that stay healthy even after cnv etc.)? I have never met anyone with myopic macular degeneration and feel very very isolated. In particular I would love to be able to talk about things with someone in a similar age bracket or someone who is working and bringing up kids. I asked my consultant if any other patients might be happy to talk to me and got short shrift! The Macular Society, while excellent, seems preoccupied with AMD and the person I spoke to on the helpline was well-meaning but not very helpful.

21 Replies
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Hi, There are lots of us out here with myopic CNV, often with different visual outcomes, but lots of positives about still working several years in etc. If you go on the Macular Society website and look at the list of w @ m (working age) support groups, there may be one near you. At the group I attend at least four of the members have myopic macular degeneration. Alternatively you can ask for a telephone buddy, but specifically ask for someone younger and with myopic degeneration. Good luck. I agree that the literature isn’t cheerful and because prognosis depends so much on the state of someone’s own retina, it seems impossible to predict.

Good luck 🌷

ukmyope
ukmyope in reply to Ceri2

Thanks, Ceri2. My consultant also said that it's a condition with a very varied series of outcomes, with the eyes being governed by multiple genetic & environmental factors that differ for each of us. I guess it becomes about learning to live with uncertainty and trying to get on with life without dwelling too much on the road ahead. Not easy!

Ceri2
Ceri2 in reply to ukmyope

Hi,

Not easy, I agree, but the initial fear does wear off and eventually it becomes a part of life, but not the major part. I found (and still do sometimes) times of change the hardest to accept and initially refused to see the employment advisor because she was employed by “Action for Blind People” and I was partially sighted, but felt like a fraud taking her time! The reality was that she gave fantastic advice and support and pointed me in the direction of Access to Work which is been an essential part of staying in a professional role.

Fabulous success stories below, so good to read these. There is some humour in all of our journeys, just not at the time! I wish I had accepted years ago how much difference good lighting could make to what I saw, instead of telling the doctor that I didn’t want a lamp I wanted a cure!

Take care 🌷

Hi I just cam on here as a break from compiling a chronology of my eye problems for the DWP, I can therefore say with some accuracy that my first CNV event, the sudden development of a Foster Fuchs spot (a bleed that scars almost immediately) occurred 30 years ago, almost to the day, and took out most of the vision in my right eye. I thankfully didn't develop CNV in my left eye until 2008, nearly 20 years later, and this has been treated since it started, and I'm using this to look at the screen.

I didn't stop driving until the very end of 2014 (and that was possibly more due to cataract than CNV) and I stopped with better vision than many do, I am a bit risk averse

I went on working until February 2017 when I was made redundant, being then in my 60s I didn't think it worth looking for another job, for a variety of reasons

It's been a bumpy ride that has involved a lot of language, some tears, and fair amount of gin. But it is possible to keep going,

Insist that everything treatable is treated if you can. And get help. Employers are obliged to get a certain amount of equipment software etc to help you, and assessment and support is out there. Go for it - there's the RNIB (not just for those who can't see much), there are local low vision clinics, there are networks like Partially Sighted and London Vision, there's the Macular Society. Yes, I know it makes you feel like an OAP, but really it's not like that. If you needed antibiotics or painkillers or more to the point physiotherapy you'd probably take it, taking low vision support is no different, so please do!

And no, I'm not forgetting the Macular Society who has local peer support groups, an excellent support line, and in your case possibly the working age group applies

ukmyope
ukmyope in reply to StokeySue

Thanks so much for this very helpful and encouraging response, and mention of various organisations - I had not heard of London Vision and will check them out with interest as that is where I am based. Can I ask - after the initial dramatic bleed in your right eye, did the eye itself then remain physiologically stable, albeit with sight loss? Many thanks again for taking the time to provide such a full response earlier.

StokeySue
StokeySue in reply to ukmyope

After the initial 2008 bleed, the eye healed fairly well with treatment. I then had several smaller bleeds, despite having prophylactic antiVEGF shots and they all cleared fairly well with a shot asap. Each must have lead to some sight loss, but the increments were small and it felt like an almost complete recovery each time

I have now developed all the components of pathological myopia - cataracts and glaucoma too, which have been treated and to me it now feels as if I see quite well, but I have pretty bad MMD related low vision, and I do lose detail, especially in a poor light. I daily bless the inventor of the dimmable led bulb, as I need the kind of light you might expect in an operating theatre for many things. Reading print is difficult but possible in short bursts, such as a letter or recipe, often using a magnifier. I am using my iPad for this forum, I find screens easier than paper, as I can turn the contrast up to 11. Since cataract surgery I can read comfortably on the Kindle app with a medium font size, but always reverse colour, white text on a black screen, this helps me a lot, I use reverse colour accessibility mode on my desktop pc but some software doesn’t respond well to this, online forms can be tricky as the tick boxes and other outlines can disappear

josexp3
josexp3 in reply to StokeySue

Hi, is good to know injections can help in your case. When you say ASAP how many days do you wait for an Injection after a bleed.

StokeySue
StokeySue in reply to josexp3

If I detect a bleed I don't wait at all - I phone the clinic right away, and we discuss moving an injection forward, usually if it's not too soon after a previous injection I have the injection within days, depending on their avaialability

I developed myopic MD in my late fifties. Left eye only. More than ten years ago, and I am still driving and doing a lot of voluntary work. I sympathise with your anxiety and sense of isolation. Dealing with the uncertainty is tough. However, it is worth looking for a local W@M group, where you will find younger people with a range of macular problems. Or if there is no W@M group nearby there may be a local support group which yes will have a lot of people with AMD but will probably include younger people too.

Hi I have Myopic CNV diagnosed in September 2017, left eye . I am myopic in both eyes -8.5 and a -9 .

I started with Lucentis injections once a month a week after diagnosis.

They have worked really well for me stopped the bleed and reduced the fluid to the point the distortion and grey patch disappeared.

After 10 injections I got a rest for 4 months and the fluid came back luckily the scans are done frequently, the eye hospital is really good and on the ball so injections were swiftly started again.

I’m now at injection no 13 , I’ve no issues with them the nurses are great at administering.

They have put me to 6 weekly at moment and will scan after injection no 14 to see if they can push out to longer intervals between . Im so thankful the injections work for now but I do need them regular, as the fluid returns.

Ive been told it could posdibly appear in right eye, I get regular scans and so far all ok.

I know how I felt when I was diagnosed, I’m relatively young , work full time , I’m an engineer and my eyes are everything to me. It hasn’t stopped me doing anything, so please keep positive.

🙏💖🙏

josexp3
josexp3 in reply to Corriesboy

I’m glad to hear that you recovered with injections. After the bleed how many time did you need for distortion and patch to dissapear?

Corriesboy
Corriesboy in reply to josexp3

Hi Josexp3,

I had one bleed in 2017 which took about 6 weeks for me to notice an improvement in the distortion and patch. This has left scarring but to be honest the eye has recovered to almost same level of vision I had before this happened.

I’ve had 19 injections in total over the last 3 years , last one being January this year due to fluid building up , not a new bleed.

Lucentis has worked really well for me and I’ve never had issues having them administered either , the nurses are great. I’ve read so much of how others have suffered and think how lucky my experience has been so far.

My eye has stabilised for now and I’m on routine OCT scans although COVID has knocked this out at the moment.

I also take eye vitamins every day, being vegetarian I have managed to source some to suit me. I also check the Amsler grid regular for any sign of deterioration.

I am not naive that that this can come back at any time but reassured that there is treatment available.

Keep positive and know that your not alone.

🙏💖🙏

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear ukmyope,

I am sorry to read that you did not obtain the information that you needed via the Advice and Information Service. If you are willing to contact us then we would be more than happy to assist in any way we can.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Hi there, I too recently had a cnv treated successfully with lucent is which is great.

I would like to say that my eyesight deteriorated as I approached my menopausal years and at the time I considered HRT, but thought better of it. From 49 to 53 I lost a diopter a year and then it stabilised. Could the growing myopic eyeball have been kept in check with HRT??? Could HRT benefit you and stop your eyeball growing increasing your risk?

lets get this out there!

How many other female myopic eyes have taken a growth on the axial length menopausally? - if this is a commonality then deffo get your gp if possible to monitor your oestrogen levels and get on HRT.

I cant say for sure that this was a true cause and effect as I had at 47 had a hard to diagnose pseudomonas infection which took the affected eye from -7 to -10, but I've been -12 for a few years now. ohh I am now 61 but young in heart and soul!!!! kids grown and flown

The whole thing is very scary. At least we have lucentis which want other people I know had irrepairable damage before this came about. Perhaps the next thing will be to develop drops that will help to prevent CNV from forming. Perhaps we should get behind some fundraising efforts?

We do seem to be a smaller group dont we? but like you it is great (through this forum) to come across others that are managing the same benefits as well as anxieties.

Ohh one other thing, take up ballroom and latin american dancing, your partner will learn to lead and you learn to follow, its a lovely activity (just requires a baby sitter) we love it and I often practise with my eyes shut ...........and for a couple of hours a week he is in charge!!

Thanks for this, pathologicallygill (great username!). It is certainly striking that such a majority of people who experience myopic cnv are female, and one does wonder whether hormones may play a role. My understanding is that oestrogen is a potential culprit due to the expression of oestrogen receptors in cnv membranes, though given that oestrogen drops at meonpause (and is replaced by HRT) I'm not sure that HRT would be the way ahead. Having said that, during peri-menopause in one's 40s (i.e. my age bracket) oestrogen declines irregularly, with some high spikes, so I suppose that could be relevant. My first cnv took place when I was breastfeeding though, when oestrogen would have been low. (Maintaining breastfeeding after Lucentis was a barrel of laughs, but that's another story!) I am sure that if there were more of us with mcnv this whole issue would have received more research!

I can't tell you all how great it is to hear from others out there, and to hear positive, realistic and supportive accounts. I wonder if there is scope for a forum specifically devoted to people dealing with our condition, not least as high myopic is on the rise?

Hi ukmyope, I think a forum in principle sounds good but I am not sure where then time would come from to keep it going in a meaningful way. This "health unblocked" has been fairly new to me and a great thing it terms of getting in touch in the community. When I was first diagnosed in was almost 5 years before I came across someone with the same condition, I almost wept. Knowing that there are others out there is very grounding and so for me this one is good enough. I find it most useful for sharing of ideas, problems, queries because then we could collectively collate and be on the watch for..........for me currently, I am keeping a close eye on the intra-occular pressure every month following the last injection because of the feeds re injection and glaucoma. Of course the two conditions may not be related, neither may oestrogen levels have anything to do with weakening eye muscles but it may pay to be vigilant. Meanwhile Its back to my day, hope yours is good and happy Mothers day

Ukmyope, I'm so glad you reached out. I totally understand your anxiety and loneliness. I can't believe you were still breastfeeding when you got your injection - I thought I was the only one!

I am 36. I was diagnosed in August 2018, about 3 months after my second girl was born Like you I am bringing up kids (my oldest is almost 4 now), and am working. I was breastfeeding at the time of diagnosis and my first Lucentis injection. I still am breastfeeding, but that's another story. I was so depressed about my diagnosis. I think I cried every night about it for at least a week. It is still hard, but definitely better. I remember wondering how you could possibly not obsess about this every second of every day, but somehow you learn to adjust. I've been going in for checks with my retina specialist about every 6-8 weeks and so far things are stable. I still have some distortion, but try to be thankful for the vision I have.

I'm sorry to hear that the Macular Society wasn't helpful to you. I found them to be immensely supportive, especially the counseling aspect. It is so therapeutic to just talk to someone who gets the day-to-day anxiety. Besides this group, there is also a group on Facebook that is very supportive.

I would love to hear more about your experiences. I hope as each day goes by things get a little easier for you.

josexp3
josexp3 in reply to besottedblue

I’m glad your eye is stable. Do you still have distortion on lines? How is you sight after a year?

Hey,

I recently been diagnosed with myopic CNV, I am interested to know how has it gone for you?

I got my first Anti VEGF injection and I am always checking my eye to see if it has improved? If the injections wotk, how long does it take to see improvements?

Regards

josexp3
josexp3 in reply to Dmes83

Had a large bleed in central. It took 3 Lucentis shots and 3 months to see improvement. New bleed today, waiting for another injection

Hi ukmyope

I also have MMD - lacquer crack in my left eye.

I was diagnosed in June this year. It has worsened quite quickly and I had an injection today as a precaution. Like you, when you wrote this, I am feeling isolated and overwhelmed.

I'm 53, a bit older than you - but wondered if you'd like to exchange messages of support and encouragement!

I'm signed up to an American blog too - there's a much younger woman who also has MMD - she writes so positively, and I take comfort in her posts. She takes various vitamin and mineral supplements. Do you?

I'm currently taking lutein, meso-zeaxanthin, & zeaxanthin capsules - for self-comforting purposes more than anything else I suppose.

Hope you're doing okay at the moment. Lockdown adds to general weirdness doesn't it!

Bluegreensea Xxx

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