Myopic CNV | 34 yr

[soywaxblend]

Hello Everyone,

I found this group because I was recently( a little over a month ago) diagnosed with Myopic CNV. I'm sharing my story here as a datapoint for this group. I'm also using this post as a way for me to keep track of my progress. When I get impatient and feel that I'm going nowhere with this I refer back to this page and see how far I have gone.

I went to a Retinal Specialist within 3 days after my left eye had a episode (Dec 2022). -9.0 on my right and -10. on my left.

First visit - I had two injections in both eyes. According to the Dr. there was small bleeding in my right eye but I can see fine. I was experiencing distortion and blurriness on my left eye.

Second visit - I had two injections in both eyes. According to the Dr. the swelling and bleeding drastically reduced. It was visible in the scan, even I could tell as a non medical person.

Distortion remains on my left eye. I didn't have any benchmark to compare and see if I had any visual improvement, because on my first visit I wore a out-of-date prescription glasses. Also in my mind, distortion is a distortion, I can't really measure it can I?

I understand that the injection is to reduce the swelling and bleeding, but what about distortion? My assumption is that if the swelling and bleeding stops, vision returns back to normal. Right?

I'm also looking into Chinese acupuncture as an supplement to the injection treatment. Anyone has insights into this domain?

Sending positive vibes and hugs!

[fed13]

Thank you soywaxblend. People's shares and posts are always of interest; even a comfort. I can only say I hope the distortion gets better, and yu have some helpful answers. I just have AMD in my left eye, but I am much older than you at 80, and my condition only occurred a few years ago. I have had many injections, and am nearly stable now. Sending you also positive vibes and hugs.

[tallyho]

hi there

Hope your doing ok

As far as monitoring your distortion goes the Amsler grid is a good tool ( tried to paste a link in here but it failed)

Best wishes to you

[Eyesurprise]

I had/have the same thing in my left eye in 2021 and had 3 eyelea injections which massively reduced the distortion to what I call a wrinkle in my vision which I now only see when I look at lots of straight lines. The consultant said it was unlikely that the injections would get it back to zero distortion but it's quite manageable now and doesn't interfere with life. Looking at straight lines and the occasional amsler grid helps me to track it and I would recommend this as did the consultant. I am 46. Hope this is of use.

[Michelephan]

My understanding is the sooner you catch the bleed and start the injections, the higher, the incident rate of vision returning it. If the blood sits there and scars the tissue. My retinal specialist said that 90% of the time the injections work to stop the bleeding, but only 30% of the time is vision completely restored.

[KDCH]

hey there,

Thanks for sharing! I had my first (and so far only 🙂) bleed a year ago. Distortion slowly receded but it took patience and in the meantime, I also developed double vision (likely due to fovea scarring) and mouches volantes. Individually, mu eyes are both good, but bifocular vision is shitty now.

My primary lesson: patience! One month is nothing in this game. Hope you will be a mich better place soon, but the first six months may be tough, vision slowly changing all the time 😏

[Anagramme]

hi, I had a bleed last year and have had three injections in my right eye. I still have some distortion but I’m learning to “look” around the distortion. With the amsler grids - print out a few and draw on them this may help to track your vision a little easier. Hope you stay well and good luck!

[PHILhr]

Good morning SoywaxblendI also have myopia CNV, it's in my right eye and have had a total of 4 Eylia injections.

I had quite a bit of distortion in my right eye with street lamp posts actually looking curved!! My myopia is -26 and -27 (right eye), I've always had poor eye sight and have been with Moorfields hospital since I was about 11 years old. I haven't had much difficulty with my eyes until my CNV two years ago at the age of 47.

The injection had a significant impact upon the destortion following 3 loading eylia injections, the fourth had no real impact - it was a test really to see if it would deal with what I described as translucent tenticals that I could see at in the lower right corner of my right eye (still have not found out what this is about)

I still suffer from destortion, cloudiness and sensitivity to light which has increased since the injections but preferably to the associated destortion of CNV.

I have also developed glaucoma, this is due to the increase in ocular pressure which I believe is associated with the injections. It may be worth asking your Ophthalmologist to give you pressure lowering medication/a drop after any injection - I actually had to ask for this after reading an article - they should have been on top of this whether or not it would have made a difference.

What is positive is I've been advised by moorfields that patients with myopic CNV normally required less frequent/less injections than people with wet or age related macular degeneration.

I'm looking forward to speaking more with you.

Regards,

Phil