I Need to Ask You About....

It never fails. I’ve left the appointment with my retina specialist, I’ve had my injection, my husband is backing the car out of the parking lot and I remember...

“I was going to ask her about…”

“You forgot your list of questions, didn’t you?”

My list of questions. Aarggh.

Use your appointment time wisely

I recently listened to Timothy G. Murray, MD, MBA, a fellow of the Association of Retina Specialists and the group’s former president, answer questions from people with AMD about their treatment. In the end, he made one thing clear. We should use the time with our retina specialist to talk about our disease and our treatment.

Since it is easy to get flustered before and during an appointment, Murray urged his listeners to check out the website of the National Eye Institute for advice on how to work with an RS and how to put together a list of questions.

The NEI’s website says, “Working together is all about good communication. There’s nothing wrong with asking lots of questions! Remember, it’s your doctor’s job to answer them. But since it’s easy to forget what you wanted to ask during an appointment, plan ahead and write down your questions before you meet.”¹

All doctors should take concerns seriously

It is easy to be overawed by your doctor. You may worry that you’re asking a stupid question or taking up too much of their time.

Dr. Murray said that your doctor needs to listen carefully to your questions and concerns — and you need to make sure you understand exactly what your doctor tells you about your eye health, your treatment plan, and what you need to do next. They want to be sure you understand what is happening. If you are silent, they may think you have no questions.

My list of questions

Take a look at these questions that I have put together over the past 3 years for my retina specialist. They may help you come up with your own list to ask during your next appointment.

• What type and stage of AMD do I have?
• What’s the difference between wet and dry AMD?
• What is geographic atrophy?
• How often do I need to get a dilated eye exam to check on my AMD?
• What do those pictures tell you about my condition?
• Does AMD put me at risk for other eye diseases?
• Can I have glaucoma and AMD?
• Are my children at risk for AMD?
• What steps can I take to slow down my AMD and protect my vision?
• Are there treatment options for my AMD?
• What should I do if I notice changes in my vision?
• Are there any symptoms I need to watch for? What do I need to do if I notice those symptoms?
• Am I going to go blind?
• What can I expect when it comes to my vision in the future?
• Is the injection going to hurt?
• What should I do after my injection?
• Which specialists can help me manage my condition?
• Are there any devices or services that can help me live with vision loss from AMD?
• What can I do to stay independent?
• What should I tell my friends and family?
• Can diet, exercise, supplements and other lifestyle changes help slow the progress of my disease?
• I get really nervous before my appointment and injection, what would you suggest to help this?
• Would new glasses help me see better?
• What should I do about sunglasses? Do some do a better job of protecting my vision than others?
• What do you think about genetic testing for AMD?
• Should I try to apply for a clinical trial for new drugs or procedures?
• What websites or organizations should I trust for information about AMD and treatments?

3 tips from the NEI

The health education specialists at the NEI have these tips to help us remember everything our doctor tells us:

1. Take notes during our appointment. We can write down our notes or record the conversation with a cell phone to listen to later. Practice beforehand so you know how to use the app.
2. Ask a friend or family member to come with us to the appointment. They can take notes, help you ask questions, or just be there to listen and support you.
3. Ask your doctor to write down the main points from the visit. Someone of the doctor’s staff may also be able to print instructions or other important information.

The goal is to walk away from your appointment feeling good about what has happened, to have your questions answered, and to believe you are in good hands. Those are also the goals of your RS. Taking care of your AMD is a team sport.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).