Hi all,
I’m brand new to the group but happy to see a lot of familiar feelings expressed out there.
I’m writing to see if any T1D’s have had to have retinal laser surgery? I believe it’s known as PRP. I’ve had T1D for 29 years (since age 9) and have been closely monitored for nonproliferative diabetic retinopathy for the last few (lost count!). Now it’s progressed to needing laser treatment.
Has anyone had this procedure done? Just wondering what the experience is like and (gulp) how much it hurts? It’s hard to get a digestible answer from the doctors.
Thanks in advance for any info you can share. Trying to figure out what to expect.
Have had T1D 42 years. I have had two laser treatments, once in each eye. Both were more than 20 years ago now. Both very successful, no pain at all. Much less discomfort than examination when Dr uses lens to shine light (brighter than the Sun) into your eye.
Thanks so much, that makes me feels so much better. Thanks for sharing your experience, hopefully mine is the same!
Hi, Molly @molope,
My experience with PRP began in 1972. The therapy was very new, then, and the lasers used were not nearly as precise as what is used today.
The pain response is variable; different people have different pain thresholds. But I have been told by many that the current generation of lasers are “almost” pain free. The technology has really, really improved in all areas of retina treatment.
Retinopathy is a funny thing. It can appear even in people who have managed their diabetes very well. I had a friend some years ago who had had diabetes a few years longer than me; he was a pediatrician and specialized in pediatric diabetes care. He developed retinopathy despite being extremely careful with his diabetes management. So, retinopathy can occur despite our best efforts to manage diabetes.
Retinopathy is said to “burn itself out.” When discovered early, and when adequately treated with PRP, the diffuse growth of capillaries on the retina seems to slow dramatically or stop completely. So the risk of loss of vision is almost eliminated after PRP.
After PRP the affected person will need to continue followup with their retina surgeon. Over the years the surgeon will watch for evidence of continued capillary growth. If such is discovered, or if the affected person should experience “a bleed,” the surgeon may choose to do a “touch up” PRP session. So you will have a long relationship with your retina specialist and her/his colleagues.
Just so you know, there are two “front end” risks with retinopathy. The first is the diffuse growth of capillaries on the retina and their potential to bleed into the vitreous of the eye. When a capillary ruptures it damages the area of the retina just around the bleed. That leaves a “blind spot” or scotoma. The area of vision affected is usually very small. But, the blood that escapes into the vitreous is quite a problem. It can remain in the vitreous for several months; it “casts a shadow” on the area of the retina behind it and obscures vision. Over time the blood will be absorbed but a few “floaters” may remain for many months.
If a capillary bleed is big enough it may completely obscure vision in the affected eye. The procedure of “last resort” for treating this condition is a “vitrectomy” (removal of the contaminated vitreous from the eye). During a vitrectomy the vitreous is replaced with fluid and, in most cases, vision is restored.
PRP can sometimes cause scarring that, over time, puts tension on the retina. This can distort vision and cause risk of retinal detachment. The condition can be rather easily resolved through surgery.
So, PRP is the route to follow when an individual demonstrates evidence of retinopathy in one or both eyes. It is generally painless and gives the individual their greatest chance of keeping their vision.
As I said above, my first PRP session was in 1972. At the time, my ophthalmologist was predicting I’d be blind in between six weeks to six years. I’m still riding my motorcycle today, so I guess he was wrong.
Best of luck to you!
Bill
Hi Bill,
Thank you so much, this is incredibly helpful! It’s so reassuring to hear from people who have “been there.” Your explanation of the longer term impacts is also clear and very helpful. It makes me glad that I decided to go with the surgeon further away but that I like better. Thanks so much! I am very happy to hear that you’re still riding!!
Molly
I have had 2 laser treatments for non diabetes related retinal tears or weak spots. Mine are due to extreme myopia, not retinopathy. I see an opthamologist for ocular hypertension (again due to the extreme myopia) and a retinal specialist for the tears and weak spots (lattice degeneration). The laser is uncomfortable, but it does reduce the bleeding, flashing lights and floaters. I take naproxen before and it helps it not hurt as much. Not nearly as awful as I thought i t would be
Hi Molly @molope, and “Yes Ma’am” I’ve had experience with LASER eye treatment for retinopathy, plenty of treatments.
So many treatments that I’ve lost count, probably more than 100, and with several variations of LASER. I was diagnosed with Retinopathy at Joslin Clinic in 1966 and was “assured” that I’d be totally blind within two years and was then referred to an ophthalmologist in Boston who confirmed the diagnosis and my prognosis and then told me about a treatment theory on which he was working - LASER photocoagulation and I volunteered as guinea pig. “MY” first LASER treatment in 1967 was a modified weapons grade “ruby” that had a fixed strength and duration - I returned every other month for more burns for a few years - there is a video of me on the Joslin site laying on the operating table [in shirt and tie] during one of my follow-up treatments in summer of 1968. My latest LASER treatment was December 2016 with a green-argon.
As far as pain or discomfort, I’ve never had much and I’ve found that the location of the burn makes a big difference - the Ruby LASER was the least painful for me. The times that I’ve felt a brief, short “pain” has been when the doctor needed to aim close to the nerve with a high power; I doubt that this will be required in your case. Because of the thousands of burns that I’ve had I don’t have any real estate available for future treatments.
If I found myself in your place and trusted the opinion and skill of the doctor, I would agree to the treatment. My decision 52 years ago has awarded me with many years of good vision and life.
Before I agreed in 1966, I had to research because I had never heard of LASER. I sot out advice from other doctors and from scientists including in NASA - turns out one of my relatives who was in charge of Apollo space mission was using a ruby LASER to mark landing sites on the moon.
Message or email me if you want to talk more.
Hi all, Just want to thank you again for sharing your experiences. This is the first time in 29 years that I’ve had to deal with a complication, and it really freaked me out. It was really comforting to hear from others that have been there. To close the loop for any others that might read this thread, I finally completed the laser treatments this week. They were delayed as I waited to start a new job and get an insurance that would let me go to the doctor with whom I felt most comfortable. It’s recommended to get 4 treatments in 4 visits. but I did 2 treatments in 2 visits for a variety of reasons. The laser treatment itself was uncomfortable but not nearly as bad as I’d been fearing. Fingers crossed that it was a one and done deal! Thanks again to all on this thread. 
My retinal specialist gave me two options.
-
Laser surgery and permanent loss of some peripheral vision in my left eye (and possible nighttime driving restriction).
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Eye injections every 2 months, forever.
I decided to go with the eye injections (Avastin) instead of the laser surgery. There was an issue with a trace amount of silicon oil (used to lubricate the needles for eye injections) getting into my left eye and settling on my vitreous humor. So I do have a few little spots floating around in my vision on my left eye. I was considering filing a malpractice suit, but the doctor did warn me this was a risk (1/500) and I did sign off on it. That didn’t stop me fantasizing about barging into the Doctor’s office, beating him unconscious, then injecting some silicon oil into one of his eyes, but I’ve tried to just live with it.
A benefit of getting injections in my left eye, is that my right eye has also stabilized without the need for injections in that eye too. Lets hope it stays that way.
Just my 2 cents. Take it or leave it.
Jess @MrEntropy, consider your self lucky. When my retinopathy was diagnosed in 1966 my primary “option” was total blindness within two years. At that time, the cause of adult blindness worldwide - other than explosion, war and fire - was retinopathy. I decided to find some other solution and found an ophthalmologist who wanted to experiment with LASER; about a year later a modified ruby LASER was used to “fix” my eyes and I still see today.
You would have been laughed out of the courts if you brought suit for using [for YOU having consented for the use of] Avastin in “off label” treatment unless you could prove that the Avastin was injected into your eye to treat either your ovarian or brain cancer. BTW, I have consented to use of Avastin for eye stabilization.
Wow, Jess. There’s a whole lot of anger in your post. The retinopathy/treatment have obviously been frustrating for you.
Sorry it feels so bad. None of us like retinopathy.
Bill
Been a type one for 24 years… had three retinal surgeries… two surgeries repairing torn retinas… One surgery for detached retina … of the two surgeries for torn retina’s I chose not to deadin The first surgery. Wasn’t so bad. Felt more like something bruising the back of your eye every time the laser went off . Again it was not that bad. That being said I chose to have the next two surgeries with whatever they put to deadin your eye… I wouldn’t have anxiety over this as these retina specialists Are pretty excellent.
I realize this is an old thread but hope some may still be on this forum. I found this page while searching for advice and peer input on diabetic retinopathy. I have type 1 - have had it for 33 years. Have seen an ophthalmologist diligently and last year started to see evidence of early non prolific retinopathy. This week when seeing my Ophthalmologist, it is now at the severe non prolific stage and so I’ve been referred to a retina specialist. I’m very worried about what to expect and was told that if they recommend laser, I will likely sacrifice some peripheral vision. I’m also worried if I do laser I can only do it once - and am not sure what the option is if the retinopathy returns. That said, I’m almost leaning toward laser over injections, as I’m concerned about side effects associated with those. If anyone has advice or experiences to share, I would be so grateful. I’ve had type 1 for most of my life and have done so much of my control on my own; a bit new to seeking out help and peer support — first post and first time on a community forum for type 1s. Probably shouldn’t have waited for something to be bad before reaching out but there it is…! Thanks very much!!
Hi @RunningGF. Welcome to TypeOneNation and the forum. This kind of LASER is not the type where you can only do it once. For example I’ve had 2 treatments on one side and zero on the other. I totally agree with getting yourself a retina specialist. They will be the right people to monitor you and explain what is happening and what can be done.
This type of LASER is mainly to prevent the growth of new blood vessels and as a way to keep deformed and possibly fragile vessels from bleeding. Yes this laser affects vision for example I have reduced night vision as a result of 2 treatments but no loss of peripheral vision. Your best bet is to talk to the specialist before getting worked up or too worried.
Good luck!
Hi Joe,
Thanks so much for your response. And thanks for the welcome. I am glad I found typeOnenation.
Thank you for sharing your experience. Can I ask, did they give you an option to do injections as well as the laser? How recently did you do both of your treatments? I agree with you, I know that I am getting a bit ahead of myself with worrying about actual treatments or options to consider before I see the specialist tomorrow, but I’m trying to get a bit of information ahead of time I guess.
Anyway, I really appreciate your response. This is one of those things that I’ve known was coming for a very long time, just because of the nature of type one, but I’ve dreaded it and have worked so hard to stave off things like this (as I know everyone on here does). I may have tricked myself into thinking all my hard work would maybe let me avoid it but we can’t really escape this sort of thing really.
Thanks again!
@RunningGF. You’re welcome.
No. In my case we wanted to LASER the area of low blood flow and tiny aneurisms. Injections were not recommended. I had a 2nd opinion and my retina specialist is awesome. So it was coagulation LASER for me. My last treatment was 12 years ago and with very good sugar control, and a portion of luck, things have stabilized and no further treatments were necessary. I see my specialist every 6 months.
That’s wonderful to hear that you haven’t needed any further treatment for 12 years. That gives me some hope!
Mine is Severe nonproliferative diabetic retinopathy, with spots in all four quadrants of both eyes. I don’t know if that is similar to your or anyone’s?
From what I have been reading, the injections sound a bit scary, not because of the actual needles or anything, although that doesn’t sound exactly pleasant obviously, but because I’m not sure of what they’re actually injecting. I’m just a bit leery of side effects.
I had to have part of my kidney removed in August 2019 (not diabetes related, but a tumor that was discovered after a car accident). I had been wondering if the blood sugar swings and loss of blood from that operation could have impacted my eye health. I don’t know if anyone has experience with blood loss and eye issues.
Hello @RunningGF and let me also welcome you to the JDRF TypeOneNation Forum! Like you, I’ve had diabetes for most of my life, and retinopathy treated, many times with LASER beams of several colors/varieties for the past 53 years. As for vision loss, some; but i’m pushing 80 and just last last week, my driver’s license was renewed until July 2028.
I received a “retinopathy” diagnosis in 1966, and as there wasn’t any treatment or “cure” in those days, I was told that I would be totally blind within two years. I was in the Boston area and found an ophthalmologist, Lloyd M. Aiello, who had a theory who was working on a theory to help people who develop retinopathy [in those days before the creation of fancy names it was just plain old “retinopathy”. His theory was, it might be possible to use a LASER beam to cauterize leaking blood vessels and dry up vessels that tended to proliferate the retina. I was in the first group of volunteers for “photo-coagulation” and had my first treatments with a Ruby LASER in 1967; it took American Optical about a year to modify a weapon-grade LASER for our use. Not knowing what would happen under the LASER, I had to be an in-hospital patient, totally relaxed with “after surgery” instructions not to bend-over or try to lift more than five pounds.
Following my initial treatment, 284 burns on my right retina, I returned as an outpatient every other month for additional treatments. My most recent LASER was with a Green-Argon beam in 2016. the eye-injection procedures are “new” on the scene so I wasn’t offered a choice “back-then”. To reduce retinal swelling, I began periodic injections of Avastin in my right eye about 18 months ago.
With thoughts to preserving your eyesight, and possibly improving eyesight, I will suggest to you that the risks - there are several, are worth taking. As for pain or discomfort, the only part that bothered me is the dilation which is the same as needed for routine retinal examination.
Feel free to ask anything you wish to know.
Hi Dennis.
Thank you so much for your response. Type one diabetics like you are heroic to me, as I remember when I was very young and first diagnosed and all the way since hearing that life expectancy is not very good, etc. etc. So you are a hero and breaking the mold and give me a lot of hope.
I plan to be 80 years old, and someday giving hope to someone as you are to me.
Reading what people are saying, the laser treatment seems a bit less scary than when I first was hearing about it. Did you experience much vision loss with your treatments over the years? I feel like a bit of a wimp asking about it, when you were so brave to be one of the first to trial this. How long were you off-line from regular activities after having the laser treatment? I have to admit, I’m a bit worried about my job, as it’s critical that I read and write for it.
Do you mind if I ask, did you see any correlation with the timing of your retinopathy onset and any other diabetic issues? I didn’t know if it started to all sort of happen at once or something?
@RunningGF, I must confess that for several years before my retinopathy diagnosis I had NOT taken care of my diabetes, in denial and just ignoring diabetes other than taking a shot of NPH every morning.
In 1966, I didn’t know anything about LASER other than what I’d seen in Buck Rogers sci-fiction, so I began asking around and was encouraged to “give it a chance” knowing that my alternative was gradual blindness - I figured that if the LASER didn’t work I’d be blind anyway. After a couple of months, most of the lifting and activity were gradually lifted because it was seen that the treatments were working and activity wouldn’t hurt treated eyes - I still use a couple of pillows when sleeping. The best thing about lifting was that we had a five-month old daughter who I could now pick up - at first I had to sit and have someone put her in my arms.
As far as working, you shouldn’t have any difficulty with reading and writing. Other than my very first LASER treatment, I would usually head directly to work and didn’t have many difficulties once my eye-dilation returned to normal - yeah, the boss let me wear sunglasses in the office. Ten years after my first LASER, I left office work and did ten years of heavy lifting in building repair and maintenance before returning to a pencil-pusher job. Weekends, during winter, I’d send alpine skiing throughout New England.
As far a diabetes related conditions, the only one I can really blame on diabetes is anatomic neuropathy - which is a severe narrowing of coronary arteries seen only in persons with long-term diabetes. This was explained to me by a surgeon who placed two child-size stents in my LAD - Left Anterior Descending coronary artery. He also saw a section of my heart that is dead - apparently from a heart-attack of which I wasn’t aware. I don’t blame the heart-attack on diabetes. My key to life, is staying active - pushing myself [my wife says too much], eating a good nutritious diet [my wife to “blame” for that], and trying not to let the little things bother me.