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!
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!!
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).
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.
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.