Living with retinal vein occlusion

Retinal vein occlusion happens when a blockage develops in a retinal vein at the back of the eye. The blockage itself can't be removed, but complications, such as swelling in the macular, can be treated to prevent any further vision loss.

Symptoms of retinal vein occlusion include blurred vision, a blind spot in your central vision, or loss of vision. The symptoms can develop quickly. It isn't normally painful unless you have complications like abnormal new blood vessels leading to glaucoma. You can learn more about the symptoms on the Moorfields Eye Hospital website.

Although there is a risk to your central vision in the affected eye, it's possible to adapt and continue enjoying daily life with retinal vein occlusion.

Central retinal vein occlusion

Central retinal vein occlusion (CRVO) occurs when the main vein in the retina at the back of the eye becomes blocked. Central retinal vein occlusion can cause severe loss of vision because it affects the macula at the centre of the retina.

Central retinal vein occlusion normally affects one eye and is painless unless you develop complications. The blockage can't be unblocked, but complications can be treated to prevent further loss of vision. Your ophthalmologist will also discuss risk factors that you can manage to limit the chance of central retinal vein occlusion happening in the other eye.

Living independently with retinal vein occlusion 

Everyone with retinal vein occlusion will need regular follow-up appointments with their ophthalmologist to detect any complications which may need treatment. All treatments come with potential risks and side effects, and the right decision for you will depend on your diagnosis and circumstances. Your ophthalmologist will discuss the pros and cons of treatments with you, including the option to have your condition monitored rather than treated.

At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you.

The ways we could help you:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

Some practical ideas to help make the most of your vision include:

• Using plenty of bright and even lighting at home.
• Low vision aids like magnifiers that help you to see details. Some simple, low-tech solutions, like phones with large numbers and large print keyboards, can make life easier.
• Everyday technology. You can read books, newspapers, and magazines on e-readers and tablets in large text. Computers and phones can read your messages out loud. You can also get clever tech such as talking microwaves and weighing scales.

Working with retinal vein occlusion

You'll probably need regular treatment for retinal vein occlusion, with follow-up appointments over several years. It's a good idea to speak to your employer about your diagnosis. They should make reasonable adjustments for you, such as giving you time to attend appointments.

If you develop vision problems in the affected eye, which is often the case with central retinal vein occlusion, you could still work with some adjustments. Employers must make reasonable adjustments to help you. You may need to explain the kind of things that could help, such as large print materials or products, such as keyboards and phones, or screen reader technology.

The Access to Work scheme also gives grants to employers for equipment or services you need to work. Grants could pay for a support worker, transport for getting to and from work, and more.

Driving with retinal vein occlusion

The DVLA has minimum standards of vision for driving. Their eyesight rules cover both visual acuity and field of vision. Retinal vein occlusion typically affects one eye. If the sight in your unaffected eye meets the required standard, you don't need to tell the DVLA. If you have any questions or concerns, speak to your ophthalmologist for advice.

Support for people living with retinal vein occlusion

Being diagnosed with retinal vein occlusion can be a worrying time. You're likely to be facing a lot of follow-up appointments for treatment over a long time. You may feel nervous about the possibility of complications. And, especially with central retinal vein occlusion, you may have to deal with visual loss in the affected eye.

Try talking to family and friends about your feelings. They may support you better if they understand how you feel. It can also help to speak to other people who've had retinal vein occlusion. Contact us to find out how we can connect you with others.

If you're dealing with central vision loss, there are tips and products, support and services to help you be as independent as possible and continue with a good quality of life. Your ophthalmologist or eye clinic may refer you for a low vision assessment to explore the useful vision you have and the visual aids that will make the most of it. Local social services can support you in keeping safe at home and getting around safely if sight loss affects your mobility.