Anyone with idiopathic CNV out there?

[IdiopathicCNV43]

Hello,

I have just been diagnosed with idiopathic choroidal neovascularization in my left eye at age 43. I have high myopia (-9), but the doctor isn't sure what caused the CNV (hence idiopathic diagnosis.) We caught it extremely fast, as I was already booked into see a specialist for a cataract in my right eye, and 3 days before the appointment, my left eye started acting strange -- horizontal lines suddenly looked wavy. So I was extremely fortunate to get in to see a doctor within days of the onset of the ICNV. He immediately gave me a shot of Lucentis and I am going back in four weeks for another shot. He was hopeful that the shots will stop further damage and could reverse the damage that occurred.

I've struggled to find much information about idiopathic CNV online as it seems quite rare, and would really welcome any success stories/experience/advice, especially from people within my age range. I feel quite alone with this condition, and I am very worried about my future, since I have a toddler and a job that requires me to read and write.

Thanks very much for any information or insight you can provide!

[KDCH]

Happy to hear that you were able to get treatment fast - that is vital! Go get the usual two additional shots also unless everything is really back to normal. I experienced incremental improvement with every shot, much to my surprise and delight.I am 45 and was diagnosed w myopic CNV in Feb. this year. Unfortunately, the initial diagnosis was not correct and I got treatment at very last minute. I have not had further bleeds since but one seems to be developing now.

The stress of not knowing whether this will become stable and having to do screen work with the blurred lines etc was too much for me and I developed stress/depression/anxiety. I recommend getting some professional help to cope with this new uncertainty and to insist on eye checks very frequently until you feel comfortable things are stable. I wish I had not told my colleagues about it because they ask how my eyes are all the time and I do not need constant reminders about my condition as it triggers anxiety - just something to consider.

I hope you will be back to “normal” vision soon (Lucentis is great) and remain stable with no further bleeds ☺️

[IdiopathicCNV43 in reply to KDCH]

Thank you so much for your wise words! I thankfully already have a wonderful therapist and I was able to see her last week to go over the diagnosis and talk through all my worries. The fear of the unknown -- how will this affect my career/family/everything?!?!? -- is what's driving me insane. I will absolutely insist on regular eye checks as well... that's definitely something that I know will calm me down. I did tell my boss about what's going on, because I needed to take a couple days off until I could see my screen a bit better after the shot, but I think I'll follow your advice and keep it relatively quiet for the reasons you mention. Last thing I need is everyone asking me about it constantly and ramping up my anxiety!

Thank you again for taking the time to respond... I will let you know how things go with the Lucentis. Fingers crossed!

[LJPx]

Hi, I am 36 and have idiopathic CNV in my left eye. I developed the waves line as you describe in Feb 2021 but it got quite severe quite quickly before I could get a diagnosis and ended up going to see a private consultant (as my central vision was now completely blurry) who then got me straight in for a Lucentis injection which did restore my sight amazingly but unfortunately, left a slight bit of damage. I then continued to have the next 2 injections (loading phase). Since then I have had to have a further 2 injections around 5 months apart as the leak returned but I caught it quickly so i just rang up and they booked me in for an injection as soon as possible. I have some damage but luckily not directly in my central vision.

I, like you, was very stressed about it at the time and struggled to sleep with worry. I have 2 young daughters, drive and need my sight for work etc. But I have come to terms with the fact it is something I will have to monitor the rest of my life and luckily there are treatments available and the team at the hospital I go to are brilliant . Hopfully in the not too distant future a cure too.

If you have any questions about my journey please don't hesitate to ask. Please do not stress too much, you have caught it quickly and is completely manageable and treatable (in my experience) just something to monitor closely.

[IdiopathicCNV43 in reply to LJPx]

Thank you so much for taking the time to share your experience! I wouldn't wish this on anyone, but it is comforting to know I'm not alone. I am SO heartened to hear that the Lucentis injections restored your sight. Do you remember how long it was before you noticed improvement? I'm 2 weeks out from the first shot and have not seen any improvement yet, though it hasn't gotten any worse, which is a relief.

The stress of not knowing is just so overwhelming... I keep looking at my toddler and panicking that I won't get to see him as he grows up, and worrying I'll have to quit my job, etc etc. The anxiety really does snowball. But it's good to hear that you had such an excellent result, and you're right that I did catch it very, very quickly which I hope will reverse the damage and prevent any more.

Thank you again so much for your insight on this!