Macular Society

Everything will be ok, accept your symptoms and live your life

Everything will be ok, accept your symptoms and live your life

Hello, I want to share my experience of Retinal Vein Occlusion. I was diagnosed with this 3 years ago, realizing that had blurred vision in my left eye. Since diagnosis, I have undergone 28 injections, every 6 weeks over a 3 year period. 12 weeks ago my consultant informed me that the injections were not working and there was a decline in my sight. I could have one more injection but after that i could be offered steroid implants. It was at that point i was looking up forums of other people who were suffering the same as me. I came across a chat from a gentlemen who had decided to stop treatment altogether. So from that moment, I decided enough was enough and I too was going to stop all treatment, don't get me wrong, my sight is bad, I scored 30 letters. Anyway i discussed this with my consultant , said i did not want the last injection, what is the point after all if its not working? He made me an appointment 6 weeks later, so I have gone 12 weeks without an injection, normally i cannot get past 6 without my sight getting worse. Today I had my appointment, my sight is bad, yeah, but my life is really not affected; i can work, i can drive, ok so i miss my glass sometimes, but apart from that it is the best decision and I still feel it is the right one. I wanted to share my story with you all who is setting out on the journey of having injections and to say, it is not the end of the world not to have treatment, I will carry on living my life as usual and accept my symptoms, just make allowances for it. I kindly thanked my consultant for his determination but happily said i hope I never have to see him again for the rest of my life, he smiled and said me too.

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I don't blame you as having these injections can take over your life. Good luck for the future, enjoy.

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Thank you and good luck to you with your injections!

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Hi Iampositive.

You are probably rght to discontinue treatment. If the injections are not working and your eye sight is getting worse despite of them then I can understand your reasoning behind your decision although perhaps the implant may have made a difference. Still, I think you are very brave.

I hope your other eye is ok and remains so for a long time to come. You seem to enjoy your life. Good for you!

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Hi from the Smilers, thank you for your post and feeding back on the decision you have made. It's tough reading the both positive and negative feeds on this Forum but they do provide a useful support network.

My hubbie has BRVO and also has been having treatment for 3 years. He had a major bleed on a long flight which left him with more or less complete loss in one eye. There was some natural drainage ahead of treatment commencing. He has only had 4 injections and can read other than 2 letters after 3 injections. We have made changes to our lifestyle which have been positive. Chloresterol is at normal levels, lighting in our home has been changed, he is an IT dinasaur but now loves his Kindle as he is an avid reader, his specs are anti glare and most importantly we get on with our lives. The one main negative is night driving! He was on regular 6 week appointments but despite ongoing bleeds the Consultant has not done any injections for a year now. He is now on a 6 month review and we await an update around Christmas.

Good luck with your journey.

From

The Smilers

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Thank you for sharing your experiences, good luck for his next review

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Thanks for your post. Good to see you have a positive outlook on life .

I decided to have the steroid implant as if my bad eye gets worse I will be unable to see well enough with the other to read easily which is very important to me. But if it comes to it no doubt I will cope (after a few tears, much swearing and gnashing of teeth lol).

I have my review on the 10th fingers crossed.

On a positive note I have just finished my first novel and into books 2&3 of the trilogy. Whether or not I get an agent or even self publish I can honestly say it has been this eye condition that pushed me to write, a lifelong dream realised which might otherwise not have been.

Here's to dancing in the rain!!!

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You are wise to stop getting injections since you are exposing yourself to risk every time you have a foreign substance injected into your body, aside from the risk of infection. The literature on certain biologics (not sure about all of them) describe a risk to what they refer to as the "fellow" eye - your GOOD eye....aside from the other potential side effects. Doctors constantly refer to the risk/benefit ratio but if there is no benefit why take a risk?

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