I’m thinking it’s probably best to give you the low-down on my retinopathy early on, since it will likely come into play in later posts and this will give me/you something to refer back to. This is a long one. My experiences are kind of interspersed between “retinopathy lessons” so go ahead and pick and choose what you want to read!
I’m going to start by posting an article that I wrote for a local diabetes newsletter a few years ago as it explains the first half of my retinopathy story pretty well. Here it is:
On July 8, 2007, I got some not-so-great news from my ophthalmologist. He saw evidence of proliferative diabetic retinopathy. I’ve had Type 1 diabetes for 25 years now, so I’ve always known this would be a possibility, but it was still pretty hard to find out it had actually happened. At 28 years old, I feel too young for this.
For those of you unfamiliar with retinopathy, and as a refresher for those of you who are familiar with it, here’s a quick explanation of the stages of retinopathy [thanks to the Mayo Clinic Website who has since changed the site, so I can’t link to it here anymore…sorry]:
- Non-proliferative Retinopathy. At this stage, microaneurysms occur. They are small areas of balloon-like swelling in the retina’s tiny blood vessels. As the disease progresses, blood vessels are blocked, depriving several areas of the retina with their blood supply. These areas of the retina send signals to the body to grow new blood vessels for nourishment.
- Proliferative Retinopathy. At this advanced stage, the signals sent by the retina for nourishment trigger the growth of new blood vessels. This condition is called proliferative retinopathy. These new blood vessels are abnormal and fragile. They grow along the retina and along the surface of the clear, vitreous gel that fills the inside of the eye. By themselves, these blood vessels do not cause symptoms or vision loss. However, they have thin, fragile walls. If they leak blood, severe vision loss and even blindness can result.
I’ve been seeing my ophthalmologist annually for as long as I can remember, and I’ve known for a while that I had non-proliferative retinopathy. About a year ago I developed a tiny blurry spot in one eye. My ophthalmologist suggested that it may have had something to do with the early stages of retinopathy, but didn’t suggest treatment at the time – he just wanted to keep an eye on it (no pun intended). Then, a few months ago, I noticed another blurry spot; only this one was larger. I went to see my ophthalmologist and that’s when he gave me that not-so-great news.
Laser surgery is often used to treat non-proliferative retinopathy and seal up the leaky blood vessels to allow more oxygen to get to the retina. Laser surgery is almost always used with proliferative retinopathy in order to make the abnormal new blood vessels shrink and disappear. It requires 1000 or more laser burns per retina. (Note that this is a completely different procedure from the “Lasik Eye Surgery” that some people get when they don’t want to wear glasses or contacts anymore.) I was told that the laser treatments themselves might reduce my night vision, make my eyes more sensitive to glare, and also affect my peripheral vision to a small extent. It’s scary and sad to hear that you may have to sacrifice some of your vision to save the rest of your vision.
I had an appointment on July 4th to go for a fluorescein angiography. During this procedure, dye was injected into a vein in my arm, and then pictures were taken of my retinas. This allowed the ophthalmologist to get a better look and determine exactly where the laser treatment needed to occur. That same day he started the laser treatments in my left eye.
My pupil was dilated, and then he put numbing drops in my eye and the also some numbing gel. Then he put a lens up against my eye. He shone a really bright light in to let him see (just like in a normal dilated-pupil eye exam), and then really quick pulses of very bright light. I had taken some painkillers ahead of time, and it didn’t hurt at all. I just had a bit of a dull ache when he was done. That said, it was still very “intense” and stressful. I made it to about 130 zaps before I got woozy (this happens to me easily) and needed to stop.
The next two visits for me (over the next two weeks) were frustrating and discouraging. I anticipated being able to progress a lot faster, but I wasn’t able to make it past 150 zaps without getting woozy and needing to stop. It didn’t help that I did have more pain during the third treatment. Then finally during the fourth treatment something clicked for me and I was able to sit for 380 zaps. It was such a boost to my confidence! I expect to be able to finish my left eye in one more treatment, and then get through my right eye in three or four treatments. It will be so good to be finished!
So far I haven’t noticed decreased peripheral vision, nor decreased night vision per se. What I have noticed is that my left eye takes a bit longer to adjust to going from light to dark or vice versa. It does adjust, but it takes a few seconds. Also, a temporary effect (for a few days after treatment) is that I sometimes see flashing lights when I close my eyes. That will not be permanent, though.
The whole experience has been quite emotional for me. Obviously there was the anxiety and fear related to the actual procedure, but it went a lot deeper than that for me. I have felt very discouraged and very sad about this new stage in my diabetic life. I’ve also recently learned that pregnancy would be very hard on my eyes, and that, if I want to protect my vision, I should wait for confirmation that the laser treatment is working and my eyes are doing better before my husband and I start a family. It has all been very hard for me to accept, especially since my control has improved drastically over the last 9 months or so. Even though I know I shouldn’t be too surprised after 25 years with this disease, it’s still pretty hard to take. It’s a serious diabetes complication, and I don’t want to be someone with a serious diabetes complication.
Two things that I have been reminding myself (and my family and friends) are:
- Diabetic retinopathy has some connection to diabetes control, but it’s not necessarily 100% avoidable. Just because I have it doesn’t mean I’ve been a “bad diabetic”. I’ve spent most of my life doing the best I could to take care of myself. Some people are just more predisposed to getting it than others.
- This does not mean I’m on my way to going blind. Many years ago, I might have been, but technology has advanced to such a degree that laser treatments can go a long way towards preventing blindness due to diabetic retinopathy. There’s a definite chance that this is the last I’ll have to deal with it. It’s not a guarantee, but there’s a good chance. Of course, this also comes with a commitment to tight control over my diabetes for the rest of my life, but I know it’s worth it.
So if you or someone you know is facing diabetic retinopathy and/or the possibility of laser treatments, please know that it’s okay to be scared and it’s okay to be discouraged. I had to take time to grieve, and I’m still not quite done with that process. But also remember that the treatments themselves aren’t that bad. They take some getting used to, but they’re really very manageable – and if I can say that, then any of you can say that too. And remember that this isn’t a death sentence for your eyes. The technology in this area is amazing and it can truly save your sight.
On the other hand, if you are a diabetic who is lucky enough not to have had to deal with diabetic retinopathy, please please take care of your diabetes. And see your ophthalmologist annually. My blurry spot was an indicator for me that something was wrong, but retinopathy often comes with no immediate symptoms. Even though there is treatment for retinopathy, laser surgery is not a cure for it. There are still risks, and your eyes are not something to gamble with – not to mention your kidneys, your feet, etc.
For those of you who are interested, here’s a little “quick and dirty” on retinopathy treatments. Keep in mind that I’m not an expert – this is just my best explanation of how I’ve learned to understand it! Particularly, I don’t have much knowledge of #1 below, so if there’s anyone out there who sees something needing correcting, please let me know!
- Laser treatments to treat background bleeds in non-proliferative retinopathy. (I believe these are called focal laser treatments.) I have never had these, but as I understand they are to stop or slow the bleeding. You would think (as I initially thought) that they could do this type of treatment on bleeding related to proliferative retinopathy (i.e. the type I have) as well, but it appears not – I’d guess because the leaky blood vessels are so small and flimsy.
- Pan-retinal photocoagulation laser treatments for proliferative retinopathy. This is the type of treatments I have had. This is also sometimes referred to as scatter laser treatment.
- Avastin injections (i.e. steroid injections). Supposedly these can help the bleeding stop, but it involves a big needle in the eye. (It also isn’t recommended while breastfeeding. My doctor wants to avoid this for now.)
- A vitrectomy. This involves going into the eye with a sort of vacuum needle and sucking the blood out of the vitreous. It’s not pretty, and it requires lots of “happy drugs” (the technical name, I’m sure) to manage the procedure. My doctor and I would prefer to avoid this treatment unless there is too much of a mess in my eye and it starts to interfere with reading, driving, etc. So far it’s not nearly at that point.
Since writing the above article, I finished all the laser treatments required at that stage and then had no more problems until the 3rd trimester of my pregnancy. At that point I started to experience more neo-vascularization (i.e. growth of new weak blood vessels) in my left eye and got more laser treatments for that. In total by now I’ve probably had about 2000-2500 zaps in my left eye and about 1000-1500 in my right. Then on the day my daughter was born I had my first major retinal haemorrhage. My left retina has bled off and on since then (meaning I currently look through a blurry, spotty mess in my left eye), but my right eye has been stable the whole time (knock on wood). My ophthalmologist has been holding off on treatment because treatment for the current problem (i.e. a vitrectomy) is very invasive and not really necessary at this point. When (if?) it stops bleeding, it should clear up eventually on its own and there shouldn’t be permanent damage.
At my last ophthalmologist appointment there was no new growth of blood vessels (yay!),and no signs of scarring or retinal detachment or anything like that (yay!). So far everything I’ve experienced is still considered “temporary” and my doctor isn’t worried, so that’s good! He says we’re not even ruling out the chance of future pregnancies so that’s also good! He’s a great doctor, and I trust him immeasurably. I’m lucky to be in his care. It definitely is frustrating, though, to be dealing with this vision issue all the time. After a bleed you do eventually get used to seeing through the mess (but it’s harder in the bright sunshine), but every time it bleeds again you get kicked down a notch again. It really starts to wear away at my patience and my optimism. I’m definitely ready to be done with it!
Anyway, there’s the background on my retinopathy – and on retinopathy in general! I’m really hoping to connect with others of you who are experiencing retinopathy as well – so give me a shout!