Advice. Share your story. Beat cnv. Myopia... - Macular Society

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Advice. Share your story. Beat cnv. Myopia. Idiopathic. MD

Macsoccer422
Macsoccer422

Idiopathic cnv at age 24. Now age 26 almost 27. Eyes originally 20/20 with 2.25 and 3.00 right and left eye respectively. Right eye had peripapillary cnv around one to two disc spaces temporally. 5 shots of avastin in total over 6 months. Have had checks up since with no bleeds and I am going every 3 months now. I do have permanent floaters from the shots which is a risk even with the silicon free ones per a new study. I do have a scotoma that is near the blind spot which is like having a noticeable blind spot now. Vision in each eye is 20/15 despite cnv in one. Please share your success stories on this post how long you have had cnv and your vision now no matter the cause. Please share if you have idiopathic cnv and what your doctor thanks. I appreciate it. Let’s be positive and win this battle.

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At age 57 had my first Cnv. Had one avastin shot and after a couple weeks the distortion greatly improved. That was over two years ago. However other eye has CSR with a lot of distortion. Still working and driving though.

Awesome glad you are doing well. Keep sharing stories. Also the ophthalmologist couldn’t help with the csr reduction?

The avastin injections did not help. Other treatments are risky and often don’t help. I ha ve had it for about ten years. I have some vision in it still and see the retina specialist every 6 months and sooner if I detect worsening. Thanks for your interest. I am sorry you have problems at such a young age. I find it frustrating that no one can give me any definitive prognosis and so must you. In time, I have accepted it and remain hopeful that progression will be slow, and new therapies will be found

Yeah exactly it’s frustrating but it’s better than other outcomes that can be terminal. The shots helped dry mine up and make the cnv go away for almost two years now and the doc said if that continues I shouldn’t ever have a problem again. It’s not bad to deal with now just worries me for the future. I think retina stem cell is coming in the next 5-10 years for all types of diseases.

Hi

My story is I have been short sighted since my teens. Reliant on glasses and contacts. In my 40s had posterior vitreous detachments which left me with annoying floaters. Then in my early 50s had a CNV in my left eye. Had 5 injections which stopped it getting worse but the damage from the leak has left me with some scarring which can't be repaired. The last injection was 16 months ago. I have an 8 weekly check up and scan and so far so good. I'm aware it could occur in the other eye at some point so i try to eat healthily, plenty of veg and take a supplement. It's all you Can do.

I feel for you suffering at such a young age. Take care and best wishes. 2468G

Macsoccer422
Macsoccer422 in reply to 2468G

Nice that’s great. Yeah even a little cnv causes scarring like mine but it’s around the optic nerve for me so I barely notice it. If you have been free 16 months once you hit the two year mark the data suggests you should be good for life with a small chance of recurrence in the cnv eye and the fellow eye unless you have dry amd then it could cause cnv at any time.

Macsoccer422
Macsoccer422 in reply to 2468G

What’s your vision before the cnv? Greater than -5?

2468G
2468G in reply to Macsoccer422

Thanks for that. It's good to hear something positive. To my knowledge I don't have dry amd.

My eyes are much worse than -5 I'm afraid. They were both about -12 before CNV. Peculiarly now though, my damaged eye has changed and my contact lens prescription is now down to -9.50. No idea how that has happened.

G

Macsoccer422
Macsoccer422 in reply to 2468G

Probably the veggies. I take luetin supplements both my eyes have improved from 3.25 and 2.25 to 2.5 and 1.75 in the past year and a half.

2468G
2468G in reply to Macsoccer422

Gosh. That's impressive. Keep on doing what you are doing.

2468G

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