Previously, we discussed some of the basics of myopic macular degeneration. I hope that helped provide those of you who have been diagnosed (or know someone who has) a general understanding of what this condition is. For my other myopic degenerates, if you’re like me, after being diagnosed you may have wondered: what can I expect at my macular degeneration appointments? So let’s chat about it!
As always with my posts about myopic macular degeneration: I am not a doctor. The information in these posts is strictly based on my experiences, along with consulting Dr. Google to confirm spellings and make sure I say things as properly as I can. Please do not rely on these posts for medical advice and always mention any questions or concerns you have to your doctor.
Before Seeing Your Retina Specialist
Mark Your Amsler Grid
If you’ve been diagnosed with any form of macular degeneration, you are probably familiar with this image. The Amsler Grid is used by eye doctors to detect changes in the vision of patients with conditions impacting the macula or optic nerve. I have a few blank Amsler Grids that I have printed out from All About Vision. I follow their instructions on how to use the grid to check my vision every few days, or as soon as I notice changes that indicate an active or benign bleed.
The morning of an appointment, I will check each eye with an Amsler Grid and mark any distortion, shadow-y areas or blank spots. I’ll bring this to my doctor’s office so they have an accurate representation of what I notice in my vision and can compare it to the retina images they take at the appointment. It also allows you to have regular tracking of changes to permanent distortion. Decide ahead of time if you want to keep copies of your Amsler Grids for your own records, so you know whether to ask your doctor to make a copy or to hand it back to you before you leave.
Eat or Pack a Snack
This suggestion is for two reasons. One is that depending on your doctor’s schedule, these appointments can run a long time. I’m usually at my doctor’s office for 3-3.5 hours each appointment. There’s a vending machine available, but I always like to make sure I have something substantial beforehand to prevent my stomach from growling while trying to explain to the doctor how my vision is doing.
The other reason is the fluorescent dye used for one of the sets of retina images that may be taken has a side effect of making people feel nauseous – especially on an empty stomach. I have been effected by this in the past, so I learned that eating ahead of time makes the process easier for me.
Eye Dilation and Eye Test
This part of the appointment will feel familiar for anybody who has ever had an eye exam. A technician will ask basic questions about your health and your vision. Next, you will test each eye by seeing how many rows you can read on an eye chart. This will give them an idea of your current visual acuity. They will then use eye drops to numb and dilate your eyes. They may also test your eye pressure. After this initial series of tests, your next step is retinal imaging.
Once you reach photography, there are two types of images your doctor may request.
The fundus is another name for the back of your eye. These photographs provide the doctor with a clear image of your retina and the area around it. More than likely, after a few initial images a photo technician will inject a small amount of fluorescent dye into one of your arms. This dye helps the camera isolate the retina in images so your doctor can see it and any fluid in your eye more clearly. These images show the size and location of bleeds as well as how your doctor will monitor new or changing laquer cracks.
Optical Coherence Tomography
An Optical Coherence Tomography (OCT) scan shows the different layers of the retina. It can show the location and density of fluid or blood in the eye, scarring, macular thickness, and areas where the retina is being pushed upwards by abnormal blood vessels. My doctor relies on this more than the fundus image to determine if I have an active or benign bleed.
Examination and Image Review with Your Doctor
My current retina specialist is actually the second doctor I’ve had to treat my myopic macular degeneration. My first doctor would look at my images on his computer screen and simply tell me whether or not I needed an injection. He wouldn’t go into any detail about changes in my scans or even show me what was on the screen. I trusted his judgement, but the two years I was a patient of his, I felt very uninformed about my condition. There were other reasons that I ultimately chose a new doctor, but it has been life-changing since I switched.
Now when I meet with my retina specialist, after briefly discussing how I feel my vision is doing and any changes I have noticed, we will look through my images together. She will show side by side comparisons of both my fundus images and OCT scans with those from the previous month so point out any changes she notices. I learned more in the first three months seeing her than I had in two years with my previous doctor. Those of you reading this with myopic macular degeneration know just how difficult it is to find information about our condition online. This is why I want to stress how much my appointments and feelings about my diagnoses improved after switching to a doctor who really spends time making sure I understand what changes she is seeing and why she will be recommending an injection or not.
OMG LOOK PUPPIES!!!!!
Come on, y’all. You know I wasn’t going to put any injection related images in this section. No one wants to see that. But it’s a big part of our lives and these appointments so I do need to talk about it. If your doctor determines that you will need to receive an injection to treat your macular degeneration, you will be taken to a sterilized room to receive the injection. Each doctor’s process is a little different, and they should explain exactly what they are going to do prior to treating you. If not, ask.
My doctor will numb my eye with a series of numbing drops and a numbing gel. She will follow those with several drops of betadine on my eye and eyelid to clean the eye and prevent infection. My doctor will then use an eyelid holder to keep my eyelids open, and apply additional numbing agents. After my eye is numb, my doctor will have me look toward the upper right or left corner, depending on which eye is receiving the injection. When receiving the injection, sometimes I will feel a small amount of pressure, but it’s not painful; I actually think the stinging of the betadine is the most uncomfortable part.
Once the injection is completed (it only takes a few seconds), the eyelid holder will be removed and your eye will be cleaned, wiping away any betadine or numbing gel that is on your eyelids. They will then do one final quick examination of your eye and send you on your way. Some doctors may send you home with eye drops to use every few hours after an injection; mine does not. It’s up to their discretion.
Follow Up for Macular Degeneration Appointments
If you receive an injection at your appointment, your doctor will want to see you back in approximately four weeks to see how treatment is performing and whether or not additional injections will be necessary. If you do not receive one, your doctor will let you know how often they would like to see you. As I mentioned in my first post, I have a highly active form of myopic macular degeneration, so I see my doctor monthly. Once I go a full year without treatment, I will be able to change my appointments to every other month. I know some people only see their retina specialists once or twice year, so it really depends on the health of your eyes.
I hope this guide for what to expect at a macular degeneration appointment has been helpful! For my myopic degenerates, let me know what other topics you would like me to cover in the future! If you don’t have MMD and you solely read this out of curiosity or to become more informed, leave me a comment about that too – you’re the kind of person I want to get to know better!