Choroidal Neovascularisation Help Please

[Corriesboy]

I was diagnosed with CNV secondary to pathologic myopia a week ago , I had first injection of Lucentis today, wasn't too bad hospital staff were great but can't stop worrying about my good eye, at moment scans all normal would like to here from anyone with similar experience and if injections have helped ? The whole visual disturbance happened suddenly when driving to work wavy lines and distortion of central vision no warning! I'm 52 , and have a -9 in that eye and a -8.5 in the good eye and wear extended wear contact lenses. Any help appreciated

[kevinaki]

It's up to YOU to save your "good eye." Please see my reply to Areds 2 gelcaps. Also research what's good for your eyes and what's bad for your eyes. Then get serious and save that precious eye! webmd.com/eye-health/good-e...

[Corriesboy in reply to kevinaki]

Thankyou I'll have a look into this 👍

[Hidden]

Hi corriesboy, the inj work for most folk so be cautiously optimistic. Hopefully you will see a difference in the amsler distortion within days.

As kevinaki says, look after your good eye. I take macushield supplements (easier than eating mountains of green veg or lots of green smoothies) and my gp prescribed them for me - I have brvo).

I wonder what guidance your clinic gave about contact lens use in bad eye post inj.? I work in a micribiology lab and see lots of eye infections due to them. We esp have to avoid eye inf after injection, do you wear specs for a few days?

Hope all goes well for you going forward.

[Corriesboy in reply to Hidden]

Thanks for reply , I have to wear specs for at least a week after the injection to minimise any risk of infection also stay away from my animals (that's difficult as I have a house full) and my horses , so just making sure I'm exrta cautious and friends helping for a few days. I've ordered the Areds2 get them tomorrow, must admit feeling a bit down about it all , the more I read the more depressed I get . I'm an engineer, love my job , and still many years of work to go, I'm probably like loads of people that get diagnosed with this 😔Just don't know what future will hold it's awful !

[Hidden in reply to Corriesboy]

Have a chat with the Macular Society, they have counselling and buddies who know what you're going through.

These sight problems we have can be compared to a bereavement. You will likely go through the same stages of grief etc though can be in any order. So be kind to yourself. You will get through this but it's ok to panic and be upset when you are first diagnosed. I cried myself to sleep the first two weeks terrified of losing the ability to read.

Nearly 3 years later I can still read, drive and work. I'm 56. Still get the odd downer but I'm learning to live with the fear.

It's easy to say but don't let the worry of an unknown future spoil what's good about today. X

[Corriesboy in reply to Hidden]

Thankyou this is exactly how I'm feeling and you all know as going through it yourself thankyou for the support through these messages it's appreciated 💜

[Ceri2]

Hi, hoping that everything calms down for you soon and that the first injection makes a difference. Cautious optimism is about right. I have myopic C N V which started around six years ago, then aged 49. The first eye responded well to treatment initially, though I did lose central vision in that eye eventually, which also made me very afraid of what would happen to the second eye. Luckily, six years later, despite a couple of bleeds in it, the second eye has responded better to treatment and is holding out. There isn't a lot of research in this area and because it's linked to eye shape, everyone's prognosis is different, not everyone develops CNV in both eyes. BUT, we are so lucky that the injections are now licensed for myopic macular degeneration, this has only happened in the last couple of years and is a massive move forward. Good luck. Many of us are still doing the jobs that we were doing when we were diagnosed, albeit with a bit more planning on a daily basis! I do remember the feeling of total panic at the time of diagnosis, it has never been that scary again and with a few ups and downs, life has continued more or less as normal. Thinking of you 🌹

[Corriesboy in reply to Ceri2]

Thankyou so much Ceri for the reply you are so right , I'm going through all the emotions at present very scared after diagnosis and hearing from people with same and what they have gone through and how they are coping is giving me some help, it's early days and I have to keep as positive as I can thankyou 💜

[Ceri2 in reply to Corriesboy]

Very early days. If ever you need it, the Macular Society do a leaflet on myopic macular degeneration. The helpline is also there if you need to talk to anyone x

[cwc123]

Hi Corriesboy

I know exactly how you feel. I am the same age as you and also highly myopic (-15 in both eyes before LASIK about 18 years ago). I suddenly developed a blind spot in one eye last year which wasn't causing any problems until it rapidly developed over a period of a few days. I have had three Lucentis injections and the eye seems stable tho the vision in it is no good for anything other than general vision. I too worry more about my good eye- what if it goes the same way. At first I was convinced I would be almost totally blind, would have to give up driving, work, never see any future grandchildren etc etc etc. I cried every day.

A year on I still worry, still sometimes torture myself by closing my good eye, still get anxious at every 6 week check up but am much more positive. There is a good chance my good eye will remain good. I don't think about it all the time and don't let it take charge of my life.

Give yourself time. Allow yourself to grieve and feel sorry for yourself but know that you will feel better in time.

Good luck and lots of love.

[Corriesboy in reply to cwc123]

Thankyou it's tough at moment , just had injection which wasn't too bad thought of it was the worse part to be honest. I found since my vision has went distorted I constantly close the good eye to see if any change in bad eye I can't stop doing it , it's horrible and something probably everyone goes through and since injection I'm doing it even more it's like I've hit some sort of panic button, I appreciatiate everyone reply as they know what I'm going through so thankyou again and good luck with your treatment xx💜

[Macular_1]

Hi Corriesboy,

So sorry to learn about your myopic macular degeneration.

The others on here have given you some good advice.

If you would like to have a chat with our helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

We also have a factsheet about 'Myopic Macular Degeneration' which we can send you.

Best wishes

Macular Society

[kalahuchi]

Hi Corriesboy,

I was diagnosed with myopic CNV 2 years ago although I was told I had "macular degeneration" about 30 years ago when there was no treatment and at that time I became pretty depressed and cried for weeks on end thinking about the future. Fortunately I managed to put it at the back of my mind so it didn't control my life. I've only had one "good eye" since I was a child so I suspect I must have had myopic cnv quite early on and, of course, you just accept it when you don't know any different.

I had the wavy lines in my "good eye" a couple of years ago when I was aged 56 and knew exactly what it was. Both eyes are affected and the vision in one eye is still good. Fortunately I had early diagnosis and treatment with Lucentis and for me it has worked very well, although it is no longer as effective as it once was and I am currently fighting to get the drug Eyelea. People with AMD are routinely switched onto Eyelea if Lucentis stops working and it is available in Wales and Scotland for our condition, but not in England.

I switch from being pragmatic to totally terrified and then I become angry about the injustice of it all, but mostly it is just a nagging worry about the future. I would say the Macular Society are fantastic and have a brilliant counselling service and help in very practical ways.

Today they've launched a petition to tackle preventable sight loss which came about because a man with our condition lost his sight through delays in his treatment. It would be great if as many of us as possible support the Macular Society. Perhaps they could post us a link - I'm sure most of us on HU won't know about the petition and I'm not very good with computers or I would post the link myself.

Someone on this forum once said to me that they try to "prepare for the worst and hope for the best" and they were very wise words indeed. Try not to let your fears for the future stop you enjoying some wonderful todays.

Sending a hug x

[Corriesboy in reply to kalahuchi]

Thankyou for those words and it's so true I'm 5 days after first lucentis injection and keep thinking will it /won't it work , driving myself crazy , I'm in Scotland so that would mean if lucentis made no difference they would try Eyelea ? I've read about that one too. I'm just hoping that they have caught this in time. I was 6 weeks in total after the distortion appeared to getting injection and my sight had deteriorated. I went to my normal optician as soon as it happened they referred me to hospital where I waited 5 weeks to getting seen by consultant , then injection a week later , it would have been same day but clinic was full. Since injection I've noticed no change and eye been fine .

[kalahuchi in reply to Corriesboy]

Often Lucentis stabilises our condition for some time and we need fewer injections than those with AMD so I hope it will keep your vision stable. I'm glad to hear you won't have the same problems with access to Eyelea as those of us in England.

My consultant gave me some very good advice when the follow up appointment after my first Lucentis injection was overlooked for 3 months. Fortunately there was no harm done as my vision was stable at that time, but he told me that if fluid was detected on the scan, I should have an injection no more than 2 weeks after. After an injection I should have a follow up in clinic no longer than 2 weeks after; always 2 weeks, and I should be very pro-active in ensuring my appointments were on time in future.

I took him at his word and they all know in clinic now that I will make a fuss very politely if my appointments are late.

Good luck and just take each day as it comes; easier said than done I know. We're all here for you if you need a bit of tea and sympathy or just a good old rant.

[Corriesboy in reply to kalahuchi]

The way it's getting done with me is first injection was last Thursday , 2nd one 24/10 then 3rd one ? November some time , the only scan was week before first injection on diagnosis and the next one is after the 3rd one to see how they are working , no one mentioned at hospital scans more regular which is kinda worrying ? I would have thought they might do one after the first to see if any changes good or bad but no mention of it . At moment still no change 😔.

[Hidden in reply to Corriesboy]

They will scan again weeks after 3rd inj. The first 3 inj are known as the "loading dose". If they scan before the 3rd they can't tell if improvement is due to inj still working in eye or if eye itself stabilised (which is the goal). If you need more inj you may get another set of 3 then review or inj, review, inj review etc.

[kalahuchi in reply to Corriesboy]

They did that kind of treatment for my right eye. That is 3 injections, one month apart and then a review. They can't do injections more frequently than once a month anyway, so more regular follow ups during that period don't really help.

With my left eye they did one injection and then a follow up a fortnight later, and after that I had monthly follow ups with injections only if and when fluid returned.

I hope the results are good. x