Hello! I'm new here and would appreciate any and all insight. I was recently diagnosed with myopic choroidal neovascularization. I have two young kids, and my job largely depends on my ability to read and write so I am pretty depressed at the diagnosis. I received a shot of Lucentis yesterday, but I don't know what to expect. Has anyone else been through this? Would you mind sharing your story?
Thank you so much.
Lucentis is one of the anti-VEGF drugs designed to reduce swollen/rogue veins in the eye and also to reduce leakage of fluid.
In some instances it can cure the problem with a few injections but in others it is a “for life” treatment.
Other treatment options are laser and PBT.
It is worth Googling to see the options and for more information.
Thank you!
Hi besottedblue.
I am 53 and have the same diagnosis as you. It is a shock to the system isn't It?. I have been myopic from the age of 19 and in my 40s had posterior vitreous detachment in both eyes. Dealt with all that fine but this takes it all up a notch. It's the not knowing what the future holds.
I initially had 4 Eylea injections which my consultant hoped would fix things for a while and the scans looked positive but 6 weeks after the last Injection I had another leak so needed another Eylea injections. Had a scan this week and I am awaiting results. Some people with CNV have excellent results from just three injections so remain positive.
Get in touch with the macular society on here they can provide good advice and support.
A worrying time for you with young children and work responsibilities but many people on this site continue to work and drive long after diagnosis.
I wish you the best of luck. 2468G
Thank you for responding. I'm in the US, but hopefully there is a similar resource here.
Hi, I was reading your reply to besotted blue and saw that you have suffered from posterior vitreous detachment. I wonder, what treatment you had for this and did it work. I have it in my left eye which is causing me problems and so far have just been offered an antibiotic eye drops which has done nothing.
I have wet AMD in my left eye and have eyelea injections and the detachment happened after the last injection nearly two months ago.
The ups and downs of life!!
Hi Eyeproblems
I had no treatment at all for either eye. Didn't know it could put you at risk of an infection which is why i presume you have eyedrops. The hospital checked for retinal detachment on both occasions and told me the lights and spots I was seeing would disappear which they did after a few weeks. The floaters that occurred at the same time have stayed but have sunk and I mostly don't notice them except in bright sunlight. As I now have macular issues I always wear sunglasses when it's sunny so this has helped me notice them less. A very very very small bonus.
As you say, the up and downs of life. 2468G
It depends very much on your exact circumstances I think
My first shots were Lucentis, and the active bleeding cleared up quite rapidly (days), which helped a lot, but it took longer for the vision to reach the maximum improvement -(weeks) but it will depend entirely on how much cnv you have, where it is in relation to the macular, and all the other elements of your own vision
There are techniques to improve reading and writing, I now find print quite difficult to read, but am fine with most screens and can write using a computer keyboard and screen as well as ever - I have MMD so the course of my disease may be different to yours.
I continued to work (mainly reading and writing) for some years after my first diagnosis 0- I am now retired due to age not disability.
Thanks for your reply. That is good to hear. How did you know the bleeding had stopped? What techniques helped you with reading and writing?
I knew the worst of the active bleeding had stopped as the blood cleared from my sight
You may only need better lighting and so on when the Lucentis takes effect.
Techniques include accessibility options in computer software, such as reverse colour - I use black on white and if you have a Kindle or other eReader you may find that much easier to read than conventional black on white. Also Zoom and magnifier functions, large icon settings, contrast settings etc.
Backlit keyboard if you aren't a competent touch typist may help
Good task lighting is important, and good LED reading lamps are now cheap and readily available from specialist suppliers but also outlets such as Amazon and IKEA. LED is low vision's best friend in my view! You ideally need a light coming over your shoulder onto the page; daylight is best but LED is a good sub
You may need different specs - I gave up on varifocals, as my [functional] fovea has shifted and I can't focus the different areas onto a good bit of retina, I need a whole lens of one prescription
It can be useful to use a copy holder for paper or a tablet stand for an iPad or Kindle, as it holds the material at a constant comfortable distance from your eyes.
Magnifiers of various types, there are dozens of kinds, even CCTV ones, expensive but good if you need a whole page magnified and the contrast sharpened - they really do a good job
I don't know where you are but if you are in the UK your employer should provide specialist equipment. BUT my employer paid a lot of money for me to see a Harley St consultant in occupational medicine who knew nothing about coping with sight loss or low vision, I am disgusted he would take the money (though admittedly he provided some psychological support). £75 spent for a consultation at the RNIB would have been so much better value, much more useful too. You may, when your sight settles down a bit, be able to get a consultation at a free NHS low vision clinic. Either there or at the RNIB or wherever you are, you usually see a specially trained optometrist, who can help you select (and sometimes provide) the equipment and techniques required. The Macular Society and local groups such as Partially Sighted organise exhibition days and meeting where you can discuss techniques and see & try samples of equipment available from commercial vendors.
What you need is quite individual. The hardest part is silencing the little voice in the head that keeps saying "But I'm not blind! Should I be dealing with the RNIB and all this hardware? Can' I just DIY?"
Yes, you jolly well should be dealing with the experts! You know what the problem but it takes an expert to identify the solution. It shouldn't be a bigger deal than that getting specs, a hearing aid, or orthotics (but of course it is)
You can also call the Macular Society and talk to them
Thank you for all this information! I'm in the states, but a lot of your ideas are transferrable. I went back to my eye doctor and he said the bleeding is decreasing, so that's good at least. I like your comparison to getting specs, hearing aids or orthotics - helps put things in perspective. I appreciate your positive tone and practical outlook.
Hi. The macular society take enquiries from around the world and you can access their website easily. There are lots of people from the US on here (forum run by mac Soc) because I don't think you have anything similar.
Sending you a hug - diagnosis is known to be akin to bereavement emotionally so be kind to yourself. X
Best wishes going forwards.
Thank you!
I had a Lucentis 11 injections over a two year period for a blocked vein, I have just been for the third time over a short time for a check after my last injection. The Consultant said it is OK and will be seeing them in three months again for a further check up. During that time it did not interfere with my day to day life.
Good luck with your treatment,
Dear besottedblue,
Please contact us on the Macular Society helpline.
The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.
Alternately, you can contact us via:
help@macularsociety.org
Kind regards,
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