Myopic CNV long term stability outcomes?

[Linky1]

Hi everyone, I'm new to this forum I was diagnosed with MMD in my left eye 5 years ago in my early 20's and have been receiving injections in my left eye every 4 months for the last 5 years. I was left with scar tissues that distorts the central vision in that eye but still stable and able to read somewhat decently at 20/30. Luckily my right eye has pretty much taken over. Unfortunately when I ask my consultant about the long term outcomes for patients or the potential for my other eye to experience a CVN event, I'm not given any answers. I was under the impression that the injections would maintain stability in my eye over the course of my lifetime but after reading literature about geographic atrophy around the CVN event I'm under the impression that is not the case and am concerned I'll be legally blind out of that eye in my 30's.

The information online is rather depressing and there doesn't seem to be any clear evidence as to stability overtime and if geographic atrophy will occur. I'm under the impression I should just prepare myself for a potential future of low vision and try to adapt my career in a direction that can be more easily accommodated. Are there any stories of anyone experiencing a CVN event early in life and still many years later still able to work and drive?

[Hidden]

Hi, sorry, can't help with your question though others here probably will be able to. Just to let you know, there is a Macular Society ' Working age and young people' Facebook page that you might also find useful.

[alalex101]

I too have MMD. I have searched for more answers regarding prognosis but found none. Please share anything you learn.

[StokeySue]

There is surprisingly little research done on MMD - shockingly little in my view, we aren’t that rare.

So nobody will give you a prognosis because they don’t have enough information.

Injections seem to be pretty good at slowing the progress of wet MD in MMD, and certainly stop bleeds in most cases. But in MMD as in AMD dry degeneration creeps in, and eventually affects vision, so injections, which don’t affect dry aren’t a permanent, total, stabilisation. But definitely worthwhile in my opinion

On the plus side, I developed CNV in my right eye in my early 30s, but not in the left eye for nearly 25 years, and that’s not unusual. So fingers crossed for your second eye.

And bear in mind there was no treatment at all for my first eye, but choices for the second. Stuff appears all the time

[alalex101]

Thanks for sharing

[RosMacularSociety Partner]

Hello Linky1,

I am copying a link to our information sheet on Myopic MD, which you could use as a discussion point with your ophthalmologist:

macularsociety.org/sites/de...

In addition, these are links to our working age information and support and other services:

macularsociety.org/news/new...

facebook.com/groups/2516963...

macularsociety.org/support-...

For further discussion, the Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[DevonianA]

So sorry you have MMD at such a young age. I have had bad myopia since the age of 14 and am now in my early 80s. I was so shocked when my optician, two and a half years ago said he thought I had MD in my right eye and referred me to the eye hospital. The consultant told me that it was due to the myopia, although it had to be called AMD if you are over 60 years of age. How nuts is that. After about 3 injections initially and occasional ones since, it has settled well, although of course it will always be somewhat distorted. The other eye has very slight dry AMD but I can see well in that one, so far. Until I did some research I had no idea of the connection between myopia and MD and apart from a USA site and one in Australia, very little research appears to have been done and none in the in the UK. It seems if your myopia is -6 or higher you at about 10% risk of MD. Mine was over -7 and I wish I had known about this as although I might not have been able to do anything about it, except perhaps following an even better diet than I did, it would at least not have been such a shock. At the moment both eyes are good so I am very thankful. Very best wishes to you and hope things will stabilise with you.