r/maculardegeneration

I was advised about 3 years ago that I had the beginnings of macular degeneration. Have just noticed some new wobbles on viewing the test chart and saw the optometrist today. It needs further testing at the hospital eye clinic but she said I have dry in the left eye and wet in the right. I’ll need injections. Not needle phobic but this is freaking me out and I’d like to be prepared for the first time getting the injection. Could someone please run me through the process and tell me about pain levels. The ophthalmologist was a bit dismissive about my concerns and reassured me that it would “be ok.”

I need to educate myself about this condition but this initial info will hopefully help me to prepare. Thanks.

Edit: Huge thanks to all those who have answered. I’m now feeling much less nervous about the whole experience. Was just reflecting with my husband about how fantastic the internet is in that we can now freely access this type of information. Thank you for sharing.

New doctor is now giving me 3 doses of betadine before and after. Assistant flushes with saline afterwards then I go home and give myself a couple of more doses. Irritation continues so I give dry eye drops OTC (I have that too although deemed not severe). Irritation persists 2-3 hours after I leave.
Anyone else have this?

I've looked this up already but I'd like to know some first hand experiences to try to better prepare for any adverse effect. My mother has an appointment with a Retina specialist. Her optometrist thinks she has wet macular degeneration but it has to be confirmed by the specialist.

She might get an injection. I'm wondering what signs to look for in the event of an infection or any other side effect. From what I've read so far, there will be some discomfort for the first couple of days and possibly some blurriness for several hours after the injection.

How would I know if there are any serious side effects such as damage to the retina or anything else?

Real Patients is looking for people and their caregivers who have been diagnosed with geographic atrophy or dry AMD for a paid online interview

Details

30 minutes of pre-work

60-minute virtual interview

Purpose

To engage with geographic atrophy / dry AMD patients to better understand their experiences.

Requirements

Diagnosed with geographic atrophy/dry age-related macular degeneration (AMD) or their caregiver

US and UK

18+

About Real Patients

Real Patients connects people living with health conditions to research opportunities that shape how healthcare works. Founded by patients, for patients—because the best way to understand the patient experience is to talk to real patients.

Hi,

I’ve been experimenting with a simple web tool to map perceived blind spots (scotomas) using dynamic noise.

The idea is that instead of using a static grid, the moving noise makes it easier to notice missing or distorted areas. You can click on those areas and generate a simple visual map.

It’s entirely browser-based, no data is collected, and you can export the result (JSON + image).

This is not a medical tool, just an experiment.

I’d really appreciate feedback, especially from people with macular conditions or anyone familiar with visual perception.

👉 https://pixelpercept.github.io/DG-test/

If anyone finds it useful and wants to support further development, there’s also a small support link — but feedback is much more important at this stage.

Thanks

Some providers are using these now but I know others think the risks outweigh the benefits. I’m wondering if the research evidence is getting stronger one way or the other

My 74-year-old father gets Eylea injections at a retina specialist. He has Medicare but it doesn’t cover copays, so each injection runs $300-400. Last year the secondary assistance program (Good Days) ran out of funding without notifying us, leaving us with a $2,000+ bill.

After a lot of research I enrolled him in two other assistance programs myself, the office never offered alternatives or helped at all. One program wouldn’t cover past bills and the other had a lookback date covering about 6 months. However, billing has been terrible at actually submitting the claims despite me providing fax numbers, portal links, everything multiple times. They’re always quick to send us a bill though.

When I first called billing about the assistance programs she was dismissive and said she’d never heard of them. Like… Good Days existed and the office signed us up for it when we were a new patient!

The program with the lookback date said the office submitted an incorrect diagnosis date on the verification form, twice. The assistance program has now faxed it back a third time.

On top of that, at our most recent appointment the doctor used sample Eylea because the office didn’t renew the prior authorization in time. I’m pretty sure it’s not legal to bill Medicare or the patient for a sampled drug but a claim was submitted. This has happened before too and we were charged then as well.

The physician is great but billing is a complete disaster. What would you do:
report to CMS, escalate to the state, or just keep pushing internally?