Laser treatment for Retinopathy- Please help!

#1

Hi all! Went to a retina specialist because I was having some problems with my eyesight. He told me I would need Anti-VEGF injections in one eye, and laser treatment in the other. The idea of laser treatment scares the absolute crap out of me, not because I’m afraid of pain or discomfort (when you’re diabetic for 17 years there isn’t a lot that bothers you. You got to do what you got to do, amiright?) but because I am afraid of what my eyesight will be like afterward. I have read so many medical papers on it, but not much in the way of patient experience. I have so many questions and when I asked my retina specialist about it, he said “Well, there’s no doubt you need it.” Which wasn’t exactly a helpful answer. So here are my questions, and if anyone could answer some of these, I would be very grateful! I am supposed to go for the first treatment this Wednesday.
(Yeah, I’m going to list these…)
1, What has your experience been?
2, What side effects did you experience? I’ve heard things like permanent spots, loss of peripheral vision, and cataracts. Has anyone ever had these symptoms, and if so, how bad? What did you do about it?
3. Is this a safe procedure? I’m terrified that I’ll twitch my eyeball and the laser will destroy my vision.
4. I know this treatment has been around since the '70’s and I’ve read some places that Anti-VEGF (avastin,… that one that begins with an ‘L’…) is supposed to replace laser treatment. Has anyone heard anything about that?

I know I’m forgetting a few questions I have, but if anyone can help, I would appreciate it! I’m just so nervous. Thank you!

#2

My husband had laser eye surgery last month. No pain, no prep and they let him drive immediately after. He said it was like ‘nothing’. :sunny:

#3

I freaked also, but the upgrades to lasers are incredible. Used to do this as a surgical procedure.

If you have a good doctor, you will be fine. I’m 65, been T1 for nearly 55 years, and with readers, my eyesight is good enough to read several books per week.

#4

I can’t speak to all of your concerns, but I do have macular degeneration in both eyes. So, I’m getting monthly injections. It sounds much worse than it really is. Sometimes the betadine drops sting for a minute or two, but there is almost no pain from the injection.

As to the laser, I’ve only had that to reduce pressure. There was concern that I was heading toward narrow-angle glaucoma. The laser is so fast that you won’t have time to flinch. If you do, the laser will have done it’s job before you react. And the doctor is not going to press the trigger if you are moving your eyes rapidly about. Even if the doctor did “miss,” it’s not going to ruin your vision. It would just create a tiny dot at a place where you don’t need it. Think of this like a camera flash — the action is frozen, even if people are moving.

As has already been noted, you should be able to discuss this with your doctor, so you know what to expect. I can’t tell you what all the side-effects might be. But I’m pretty sure what the side-effects of NOT having the treatment will be.

#5

I had both eyes treated with laser for mild glaucoma within the past 6 weeks. It is very quick and easy. Absolutely no pain or discomfort. I drove home 30 minutes after each treatment. My brother has had numerous laser treatments for retinopathy. For him it was very simple and no discomfort. As the other folks mentioned, let your Doc know about your concerns. This technology is very well established and is an amazing preventative treatment.

#6

I’ve had a fair bit of laser done to each eye in response to diabetic retinopathy (diagnosed following some vitreous hemorrhages in one eye). The only differences I’ve noticed in terms of vision is for my nighttime driving. I can still do it, but my night vision is a little worse to the point where I started noticing anxiety driving at night in unfamiliar places or in bad weather. It sucks, but I try to limit those situations or at least make sure I have my GPS on.

As people have said, they know what they are doing with the laser, and they actually have this thing pressed up against your eye when they do it, so it’s not something where your eye can easily move and they can then miss it. It’s hard to explain exactly, but they do this A LOT, and it works. I was nervous about the same thing though :slight_smile: also very nervous before my first injection, which wasn’t nearly as bad as I expected (no you can’t see the needle).

However, it definitely was uncomfortable/hurt (discomfort sort of builds as the laser goes, but my doctor told me to let her know when I needed a break and/or if I needed to stop (I had it done across a few sessions).I had to some done fairly close to the ocular nerve, which was by far the worst of it, so your experience may vary depending on the location. Tolerable though, and my eye felt off/ached a bit for an hour or so afterward but nothing bad.

I’ve also had Avastin injections, which is what I’m doing now to manage a remaining bit of vasculature that tends to become active and hemorrhage if left alone. My doctor told me that for older people, treatments may resolve those kinds of vessels, but in younger folks like myself (mid 30s), the vessels tend to return. The downside to Avastin, vs laser, is that it lasts about a month in terms of its active effects. I know for my situation, I needed something more aggressive and permanent to help initially, or else I’d have been looking at monthly injections, and the doctor thought that the combo of laser (with the tolerable side effect of minimal peripheral/night vision loss) and Avastin was the best bet. Now that my eye has stabilized more, Avastin every 4-6 months seems to work well, so that’s what I’m doing likely for the foreseeable future. Apparently there may be preventative benefits. Studies are currently looking into that—my doc mentioned she suspects that eventually Avastin may be given more aggressively as preventative treatments to diabetics, but the evidence isn’t there yet (studies are in progress).

I feel good about my treatment plan in part because I have an experienced retina expert treating me, and I also sought out a second opinion from another one who supported the treatment plan. If you’re not sure, and if you have the ability, get a second opinion.

#7

If you’ve ever had an eye doctor shine a light in your eye, well, it’s just like that, only faster. It’s absolutely routine these days. According to my ophthalmologist’s office, it’s about as serious as getting your teeth cleaned.
I have had laser treatments many, many times over the past 25 or so years. Once or twice after a serious session of many zaps, I’ve had a headache for a few hours. There has never been pain. There is no danger that the beam will go astray and burn a hole in your brain. (I used to worry about that in the beginning.)
As others have mentioned, eventually night vision might suffer. And cataracts can often be a long-term result of laser surgery, but you’re probably looking at 20-odd years from now, depending on frequency of treatments, and cataract surgery is itself pretty routine these days.
With both laser treatments and Avastin injections, the fear is often far more of a problem than the procedure itself.

#8

Thank you SO MUCH EVERYONE. This has been really reassuring, and super informative. My doctor has told me that the problem for this treatment is that people do not come for the monthly injections. I have already got one, and it wasn’t bad at all. I’m not squeamish about pain or discomfort, and I have a pretty high tolerance to pain, so I’m not worried about that aspect of it at all.

It was a little hard to follow because it all seemed to blindside (ahahaha) me when I got the diagnosis and he was telling me my treatment plan. Now with all the information everyone has provided me with, I’m thinking my retina specialist might be treating this a little too aggresively. I thought I heard him say something about the avastin injections twice a month, but I will have to ask him about that and his reasoning. I thought that the injection lasted a month, so I’m not sure why I would need two injections a month.

Has anyone experienced any issues with glare? What brought me to the retina specialist in the first place was that I was getting this awful glare in sunlight, but only sunlight. I have no problem with indoor lighting, even bright lights or fluorescent lighting, and very minimal with oncoming headlights at night. But in the sunlight, it seems so bad that sometimes I was unable to drive! I was getting terrified of taking my car out during the day for that reason alone. (And go figure, someone ELSE hit my car the other day. :triumph: :sob: ) I was on Topomax for migraines, and since I have gone off of it (that stuff is awful, I was on it for 5 years) I’ve noticed a reduction in the glare, but it is still present. Anyone have any insight on this?

Again, thank you all so so much!

#9

This is super helpful. One of my biggest fears is that I will lose my sight. I’m a graphic artist. Its so good to hear that you’ve not had any long term problems with the surgery and that your eyes are doing well! I also read quite a bit myself!

#10

Great analogy with the camera, I totally get what you mean! I had absolutely no understanding of how it was even done.

#11

I’m 28, and my retina specialist told me that he thinks we caught all of this in time to keep it from progressing, however he recomended monthly injections AND laser therapy. One eye is significantly worse than the other, though I don’t have floaters or blind spots. My vision in that eye is slightly blurry, and color looks dull. Also the Amsler grid looks a little wonky. Did you end up getting monthly injections?

#12

See that was my concern. My eyes have always been super sensitive to light. I’m almost photophobic, and my eyes squint and blink and water even with camera flashes. However I was told that the laser is so quick that it’s faster than my eye can react. I think holding my eye open will be the biggest problem!

#13

They have something up against it so you don’t have to hold it open, at least for me. Trust me, I’m sensitive in all those ways too, and terrible re: stuff being done to my eyes (well, at least, I was at the start of this), and it went fine.

So I was further along than you when I got treated (thanks crappy grad school healthcare for many years…), and I also had one eye that was worse (my doctor said that for some reason, that is typical). I had laser in both eyes, and then injections only in the worse one (it continued to have minor hemorrhages). Initially I did the injections monthly, I think 3x, and then the vessels became sclerotic (a good thing in this context!), so we stopped. I’ve had periodic injections since, and we’ve discovered through trial and error that a 4-6 month window seems to work well. My other eye has been stable the entire time, so haven’t wanted to mess with it further.

#14

DO NOT STRESS. It’s totally easy, fine. I had a random vitreous hemorrhage and went in - I wasn’t prepped or knew anything about the options or process. They’ll numb your eye (drops and lidocaine, totally painless and quick). They put a thing over your eye to hold it open of course, and they bring the laser pretty close (kind of like the non-air pressure test). A couple things:

  1. It is BRIGHT.
  2. It is uncomfortable (in the way of staring at the sun too long and you really want to close your eye because it’s bright but you can’t).
  3. IF (not likely - they did 900 zaps in my eye, and it only happened twice)…so, IF they hit a nerve with the light, it does sting for a quick second. BUT HONESTLY, no worse than if you’ve ever poked yourself in the eye with your finger or an eyelash that you can’t quite find right away so it hurts? Or maybe chlorine got in your eye from the pool?
  4. You will be totally blind (blacked out) for UP TO 5 minutes afterward (mine only lasted a minute). So, yes it’s scary because, whoa you can’t see a dang thing…but it COMPLETELY goes away, and fast.

I drove myself home right after. I left the exam room, scheduled, and was totally fine. Now, I had the hemorrhage thing going on, so I still had some blood in there floating around from that. But otherwise, totally back to normal.

  1. You will likely have a headache. Like, from staring at your phone/TV/computer for too long. Or like you weren’t wearing sunglasses outside and you burnt your eyelids/eyes (feeling). I took two ibuprofen and took a nap.

I did buy a cheapo eye patch. Not because the doc said to or because I needed it. But, I felt better having total darkness after that much light. I just kind of wanted it to chill.

As for the shots, I don’t know how that goes and don’t have any insight. But I’m sure it sounds worse than it is :slight_smile:

So: to wrap up answers to your questions…

  1. Pretty good experience. No lasting pain. Just a little weird and uncomfy.
  2. Couple minutes of blacked out-ness immediately afterward. Mild headache. My eye was a little red in appearance, but just like a regular tired eye or allergy eye.
  3. My experience was safe. I know I twitched and wasn’t looking straight forward consistently. They have the thing to hold your eyelids open - but after the first light comes on, you can’t really see what you’re looking at or where. So, just do your best to look forward-ish. Obviously, I would try to limit googling around, lol!
  4. I haven’t heard anything about it, but my specialist said the injections were “more invasive” than the laser and he would recommend that as a second step, only if necessary.

I hope this helps :slight_smile:

#15

I had mine many years ago (laser) and my experience was similar to @cmht1d, with one big difference: there would have been no way I could have driven a car afterwards. Please have someone go with you. It’s also an advantage if the weather is cloudy. I also wore 2 pairs of sunglasses and a large hat on the way home, and spent the evening listening to music.

good luck and let us know how it goes!

#16

That actually sounds similar to what my doctor said I needed. Thank you so much for sharing!

#17

I’m a little late to the party here but I have had everything you are talking about in spades.

A couple of points on the laser that come to mind are these; you want to have a Dr. using the most up to date laser system available. There is quite a bit of difference between the older versions and the newer technologies. I have had treatments on both and the new stuff is much more comfortable and effective. Also, depending on the amount and intensity of the laser treatment there can be some collateral damage. I have some myself because of both of these issues. It doesn’t sound like you have nearly the amount of retinopathy that I did at the time.

As for the injections, I am on my fifth different medication for these. They seem to always want to start with Avastin I was told that it normally lasts about a week. It is only effective when it is present. This would be a reason they might want to do it more often than every month. I ended up having vitrectomy’s in both eyes and once that was done the Avastin would only remain for a couple days. That is when we moved to other medications. I’m still getting injections of Ilyea (?) Which started out every four weeks. I am now on a 10 week interval. It has made a noticeable improvement.

My retinologist told me the first time he gave me injections that this would hasten the development of cataracts. People with diabetes are already prone to developing cataracts earlier than normal. After about 2 1/2 years of treatment I required cataract surgery in order to continue treatment. This was the worst experience of all that I have encountered with my eyesight (the cataracts that is, not the surgery). They were reluctant to do surgery for my cataracts because it had a likely potential of causing more swelling of my retinas. I would ask your ophthalmologist to take a close look for you. Glare was the biggest issue with cataracts. And it was an issue before I even realized what was causing it.

I can say a whole lot more but I will spare you the rambling. If you have other questions about anything related to your retinopathy I’m more than glad to share my experiences with you. Just get in touch.

#18

Wow this really helped a lot! Thanks so much, this really put me at ease. I’m one of those people who does a ton of research, and I already did google the crap out of it when I suspected retinopathy. Cue me literally hiding in my closet with my ferret and a beer hahaha. I did notice that there was no info on patient experience with the laser treatment. Couldn’t find a thing! Thought there had to be SOMEone who could share their experience! Thanks so much, this is great info.

Also, the first eye injection I got, I had to go to work. I work 12 hour night shifts in an ER, and I grabbed some medical tape and taped my eye shut! (couldn’t find the eye patches hahaha)

#19

I will let you all know! I’m so sensitive to sunlight that I’m sure I won’t be able to drive. I’ve already got a ride set up. Thanks so much!

#20

Hey Randy! Thanks for the info, very much appreciated. When you say that the avastin only lasted a few days, how could you tell? The medication my doctor is using is actually Lucentis, which I think is similar but he said it was “more intended for diabetics.”