Myopic CNV and Eylea

[kalahuchi]

If any of you read my last post about England refusing to fund Eylea for myopic CNV while it's available for our condition in Scotland and Wales (and Japan, and the EU .....) I decided to write to my Member of Parliament so I hope I get a response soon.

If anyone has pathological myopia/myopic CNV and would like to get in touch, do contact me either via the forum or on twitter @kalahuchi. It's dead easy to get on twitter. I only joined a couple of days ago and just started off with a Google search. Another member of the Macular Society (who isn't on Healthunlocked) is very active on twitter and he puts up a lot of news that affects us. He's put out a general request for anyone with our condition to get in touch - just search "myopic CNV" on twitter and he comes up. I think we're stronger together so if there's anybody out there, with or without myopic CNV, who can lend their voice it would be great and I'll update you of developments as they occur x

[rosyG]

well done strength in numbers!!

[kalahuchi in reply to rosyG]

Thank you RosyG x

[Rosalyn-helpline Partner]

Dear kalahuchi,

It may be worth you raising your concerns directly with our Chief Executive Cathy Yelf. She can be contacted by emailing:

[e-mail]

and marking it FAO Cathy Yelf.

Kind regards,

Rosalyn

Macular Society helpline

0300 3030 111

[BasiRose]

I was diagnosed with myopic cnv. I am very myopic. After 22 injections in my left eye, and no decrease in the fluid behind the retina, one doctor finally reevaluated me and said, "I believe you have retinoschisis."

You can imagine my shock at having to endure these injections! There is no treatment for retinoschisis but to just monitor it. I was relieved and upset at the same time. Wanted to share my story just in case it can help someone else who injections aren't working for them.

[kalahuchi in reply to BasiRose]

My goodness; what an ordeal. Thank you for sharing your story. None of us mind the treatment if there's a good result at the end but after so many injections and no improvement that must be horrible. Sending a big hug x

[BasiRose in reply to kalahuchi]

Thanks. Hugs always welcome.😊

[Hidden in reply to BasiRose]

Basirose, sorry to hear this, best wishes to you going forward x

May I ask -you say no reduction in fluid. Was that not at all or did it reduce then come back between inj? I ask as I've had 23 inj and its been a rollercoaster, now on steroid implant. I do wonder sometimes if my original problem (brvo) has turned into something else 2 1/2 years down the line. Think I need to do a bit of research before next review!

[BasiRose in reply to Hidden]

Hi Eyesright,

Somewhat of a small reduction but not what doctors hoped after so many injections.

Im sorry for your issues as well. It's hard to deal with this some days. Yes, I would encourage research because it never hurts to be your own advocate when it comes to your health. Keep us posted and good luck in your quest and hope all turns around to be better for you and all of us suffering with our eye issues.

[kalahuchi in reply to Hidden]

Hi Eyesright,

It's so complex isn't it? The fluid in my right eye usually goes after an injection but after an injection just over a month ago it got worse rather than better and there were signs of an increase in inflammation on OCT too. Since that OCT scan I've had another Lucentis (Last Tuesday). I'm very aware that a few hours on Google can't make up for a lifetime of experience so I've arranged an appointment to speak to my consultant in person on my next review in mid-August.

I do hope your steroid implant has a good effect x