Pathological Myopia - anxiety

[EalingMamaRelocating]

Hi, I’ve been diagnosed with pathological myopia (around -10D in both eyes). I have lattice degeneration and a now repaired tear and some lacquer cracks observed on the macula. I’m at high risk of retinal tears, detachment, MMD etc. My macula/central vision is fine, for now. I am 40 years old. No family history - not even my parents need glasses! Has anyone else been in this situation? How do you cope with the monitoring and worry? I am paralysed with fear about my future and struggling day to day since my diagnosis. My private consultant has said she wants me to be monitored every 4 months but my health insurance won't cover this so need to go via the NHS and I accept that regular monitoring won't be possible. I'm based in the UK. If anyone can share any positive stories it would be greatly appreciated!

I'm sorry you're going through this, it sounds quite frightening and stressful. Regarding the NHS, do you know for sure that regular monitoring won't be possible? Sorry if that's a stupid question, you've probably checked this.

Are you fearful of losing your sight? What has your consultant told you about the risks? As in, is there anything you can do to minimise them?

Was the repaired tear a surgical procedure?

You could try contacting the RNIB ( as they can be helpful with issues like this. They have factsheets and so on, and (I hope you don't mind me saying) it might be useful to at least see what help there may be if your sight does deteriorate. My mum had macular degeneration (I know that's a different problem) but we found quite a few ways around everyday life for her.

However, you probably won't need anything of that nature - just useful to be well informed!

I’m so sorry you’re going through this. I have a different problem affecting my Maculars and I recommend contacting the Macular Society.

If your health insurance won't cover it, you might want to focus on finding an NHS hospital who specialises in this, or if you are in near London then ask if you can be referred to Moorfields by your GP through choose and book. That way should you need any treatments you are in the best place already. I have a different condition that affects my retina and I've been attending eye appointments somewhere between fortnightly and 3 monthly since I was a teenager. Sometimes I get bigger gaps, but not often. I think you have to allow a bit of time to sort of adapt to the change. You've gone from taking eyesight for granted to it now being something you have to monitor and treat and the uncertainty is really hard to get used to for a while. But it will become more normal in time. I've had retinal surgery, laser and cryopexy, and a cataract op, but I'm still driving and reading just fine. I've also had the anti-VEGF injections and they are much more tolerable than you would think.