Hi all! I’m new to the forum, but I can already tell I’ve found a home! So… T1D for almost 19 years. I’ve been struggling with controlling my diabetes for about 17 of those 19 years. Laziness and the invincibility complex are to blame. Anywho, enough of the sob stories. I was diagnosed with proliferative retinopathy May 2015. I’ve received monthly injections in both eyes, as well as laser treatment twice. Now its gotten worse, and the treatments aren’t helping. It’s not safe for me to drive. I want a vitrectomy, but I don’t know if this is the best solution for me. I’m 28 years old, and my doctor mentioned that he is seeing this more often in younger adults. Any suggestions??? Thank you all, and God bless!
Hi Zoopstress, I’ve also suffered with retinopathy for many years and undergone many bouts of laser to both eyes. For last 2 years I’ve had the vitreous pulling on the macula. Doctors say I am stable and should’nt rush into it.
I live alone and having a vitrectomy would involve renting post-surgical equipment. With a vitrectomy they insert a gas bubble and fit it tightly against eye. The problem, for me, is that your head has to remain lowered for days. You need to sleep face down, sit and eat face down.
Despite having necessary equipment, I, myself could not manage it. My own diabetic needs would make it near-impossible. I did ask if it were possible to stay in hospital for a few days, but, they won’t do that.
I am more than twice your age and that makes a big difference.
I would tell you to seek the very best doctors. You may have support from family and, hopefully, the vitrectomy will not be too difficult.
I wish you the very best. Please let me know what you decide
Hello to both of you. I also have retinopathy and have a had all the lasers, injections and three vitrectomy’s. I had one in my right eye and 2 in my left eye (they needed to take a second shot at the left one). Only after the second procedure in my left eye did they inject a gas bubble. It seems that along one edge of my left retina that it appeared to maybe be separating a bit. So, the bubble was inserted and I had to spend the next 72 hours predominantly laying my head to the right so the bubble would force my retina against the back of my eye to prevent it from separating. That was the only time I had to deal with that. The other two times I just had to be careful at what I lifted and any exercise for about a week.
The vitrectomy is simply the removal of the gelatinous material that fills the eyeball. It is then replaced with a saline material or solution. That is all that vitrectomy is. This procedure is used to facilitate other work done inside the eye. Unless your eyeball is filled with blood clots or some other foreign material the only reason to have a vitrectomy is to perform further work. I really don’t know what a vitrectomy would do to help proliferative retinopathy. Proliferative retinopathy is when new small blood vessels in the retina are generated by the body’s response to the damaged ones. Unfortunately the new ones aren’t as small nor as uniform as the ones your body is trying to replace. This causes the retina to become uneven and distorts the image that the retina receives. My father has proliferative retinopathy. My retinopathy is not proliferative. According to my retinogist and everything that I have studied proliferative retinopathy, due to its nature, is not reversible. I don’t know if you have been going to an ophthalmologist or retinogist, but if you have not been going to a retinogist I highly recommend you do so immediately.
Zoopstress, I hate to be the one to tell you and this if you didn’t already know it. The thing is, even in my case which is not proliferative, that a complete reversal of retinopathy, I do not believe, is possible in any case. My vision is much better than when I first started receiving treatments, but I am still legally blind. The only thing we can do, no matter what stage our retinopathy is in when we decide to deal with it is to control our blood sugar as tightly as possible. At the least this well keep the wolves at bay. At best we can stop it where it is and hopefully, to some extent, reverse the condition and stop its advancement. Doing nothing is really not an option.
I truly, and I do mean truly, understand how you feel. I wish more than you can know that I was telling you something different than I am. If I can be of any support in any way please don’t hesitate to contact me. And, don’t give up I don’t always see that I have a message and I have a little more problem navigating some of the new website, but I most definitely will get back in touch with you. One thing that I have done that has been helpful is to seek out assistance in the way of technology to help me see things. The best help in this regard came through my State Department of services for the blind. Another thing that has been quite helpful is that I found a support group in Seattle for people with low vision. There are a lot of us out there. Hope this all is of some help and again ask for support, seek out support, and make sure, make damn sure you are getting the best possible medical treatment for this issue.
Hey Randy5, Thank you so much for your very detailed report on retinopathy. You are so right about glucose control. I have floaters when my numbers go from high highs to low lows.
I don’t think I could manage with the gas bubble but I’ll see as time goes on. I live in New York and go to Vitreous Retinal Macular Consulants and they know their stuff.
I’m glad for you that you stayed on top of your condition and that you’ve had improved vision. My best to you!
My mom had one of the first 100 of these in the country. At the time it was an experimental procedure and insurance did not cover it so, the doctors charged it as a research project. The results were not the best but even with her amazingly terrible retinopathy it did improve it slightly. She had 3 on one eye and one on the other.
This procedure has come a long way and of course i have no information that could be helpful. So I will wish you well, and let you knwo i woudl love to knwo how things turn out. I have minor background retinopathy that is not progressing. So I do not expect to face this issue personality, but I am happy to learn more of the procedure. If you care too please keep us posted i for one am most interested
best of luck
Thank you for your reply! Sadly, I agree with you. The recovery process would probably be too extreme for me. Surprisingly, this morning I noticed that some of the floaters in my left eye had disappeared. Or maybe I’m adjusting to it again. I think I had a recent bleed earlier in December that caused this panic. Usually when I have the treatments, it clears up but this time its taking longer. My doctor is on maternity leave so I’ve been seeing a different retina specialist, but he seems to be a little off… when my original specialist returns in March, I’ll discuss further with her. I wish you luck, and I will definitely keep you posted!
Hi Randy! Wow…you opened my eyes so much from this post (no pun intended ). My biggest fear was the recovery process, and also that the procedure wouldn’t even help. My current retina specialist is a fill in for my original because she’s out on maternity leave. He doesn’t act as concerned… I asked what are my options for a permanent treatment - he responded with “this is the permanent treatment…” He was referring to the laser treatment that I get monthly. Confused the hell outta me but, I’m no doctor. Anywho, I think I panicked this last time I had a serious bleed because it hasn’t cleared up yet, but I will continue to do my research and keep you posted on what I end up doing. Thank you so much for your inspiration and kind words!
Hi Rick! I will continue with my research and let you know what happens. I’m not scheduled to see my retina specialist until March, but if this latest bleed doesn’t clear up sooner, I may be going in earlier. Thanks!
I certainly understand wanting it cleared up. I am so fortunate to not have this issue, but if I did, I knwo I woudl be over at the eye specialist demanding action
I ended up having four surgeries in one year…and it all started with a vitrectomy. I’m not saying necessarily that the first surgery was to blame for all the problems that came after, but there is a strong case for it being part of the cause.
My retinopathy was very advanced and I had neglected to do anything about it for years, so going in I was already a high risk case.
After the first surgery I had a hemorrhage that sent me back in to another surgery. Then my retina began to detach again, and a few other small issues popped up, so I was sent back in to have a scleral buckle put on and a couple other procedures done at the same time. Then I had a couple other issues including the damned retina not wanting to stay put, so I went back in. My fourth surgery was done by two surgeons because one had to deal with yet more hemorrhages and scar tissue, etc., and the other had to give me an artificial lens because all these surgeries had caused a cataract to form.
All I’m saying is, don’t jump into surgery unless it is absolutely necessary. Doctors use it as a last resort because the eyes are so fragile, complications can cause a kind of avalanche of issues.
Hi zoopstress! I have also been a diabetic for 19 years. I am 28 years old and was diagnosed when I was 9. I struggled many years with an A1C in the 10-13 range. I had my A1C checked last week and it was 7.4. I am headed in the right direction. I have been on a pump since I was 11 but recently started on Victoza and Invokana. They seem to be helping a lot.
I started having eye trouble this past year. I skipped a few years of going to the eye doctor and when I returned last year, my vision had gotten worse. I had one round of laser in each eye in December/January. I went back to him a few weeks ago because I began seeing shadows/floaters. He did another round of laser in my left eye but it hasn’t improved. He mentioned that Vitrectomy would be the next step. I see your post is from January and I’m just curious if you ended up doing the Vitrectomy or not.
I hope you are doing well!
I had a vitrectomy to rid of the blood from a nasty hemorrhage. I did have the bubble, but did NOT have to position for it. My doctor said you only need to position if there is a retinal tear during the procedure. Anyway, your vision does get worse before it gets better after the procedure. But now that my eye has fully healed, I joke I can see Utah (I live in Scottsdale😎). I am now getting scheduled to have a vtrectomy in my other eye. Again, I have old blood in the vitreous gel creating floaters and vision blocks. This will not cure the retinopathy. I also had to undergo those nasty shots and painful laser for that. Knowing how good my vision will get to after the healing, has me looking forward to the next vitrectomy. There is somebody who had posted on this quite a bit, Cinderfella. He unfortunately did not have a good result.
Please explain what you meant by not having to
"position it" (gas bubble).
I’ve had the vitreous pulling on the macula. Doctors advised against it as of last year because my vision, so far, has been stable.
I hope and pray that it remains that way because if things get worse I’ll need for one doctor to remove a cataract and another to do the vitrectomy. But the very worst of it all would be for me to remain face down using a device for a number of days. That can’t and won’t happen because I live alone and could never take care of my D needs.
If there’s a better technique out there, please tell me about it.
I have proliferative diabetic retinopathy with macular edema (type 1 for 18 yrs). It started as non-proliferative retinopathy in early 2012, for which I received grid and focal laser treatment. This stabilized the problem for a few months, when a severe episode of DKA triggered macular edema. More focal laser and Avastin injections followed, which addressed the swelling. A few more episodes of DKA followed as I was also dealing with gastroparesis, where I also learned you can have DKA with a blood glucose consistently under 200.
The proliferative phase was triggered and several bleeds occurred, enough to seriously affect my field of vision. The macular edema also blurred my vision to 20/200 in both eyes.
The retina doc also diagnosed the existence of an epi-retinal membrane (ERM) that contributed to the macular edema. When Avastin was no longer proving effective, we moved to Lucentis. I also had huge floaters because the bleeds only cleared partially. I also had sugery on both eyes due to posterior subcapsular cataracts.
In 2015 I underwent surgery for vitrectomy with laser and peeling of the ERM. Due to problems with anesthesia it was done under MAC, local anesthesia together with sedation and analgesia. It took about 40 minutes. I had to lay very still on the table which was very difficult - I have tendinitis in my shoulders and it can be very painful even with the MAC.
After removing the vitreous, the doctor performed laser inside the eye, then removed the ERM, the most delicate part. After, the doc put in fluid to replace the vitreous and a bubble.
There were no position requirements, just lifting and bending restrictions. I also had a regimen of eye drops and had to wear a eye shield for sleeping. The day after surgery I could see the bubble at the bottom of my vision because of the way your eyes reverse everything. The bubble got smaller every day until it disappeared, about 10 day. The floaters were gone. I permanently lost a portion of my vision, a cloud shaped greyness in the central left part of my visual field. My peripheral vision is now 20/20 in that eye due to removal of the ERM.
I need a vitrectomy on the other eye, just to clear the floaters. An ERM peel is just too risky. I have Eylea injections in both eyes every five weeks to maintain things at the current level.
That’s my experience, hope this helps.
I am 28 and have bee type one since I was 3 years old. I have proliferative retinopathy in both eyes. I have had vitrectomies in both as well.
They come with risk of rebleed, so the surgery is not a guaranteed one stop fix. I’ve also been blind for a month now waiting for recovery of any vision in my left eye. Keep that in mind that this is a long road to recovery, but as long as your surgeon is good, you should get results.
One thing I learned in my vitrectomy journey is to tell the difference between the floaters associated with bleeds or detachments, and what I call 'bubble floaters" which are a little annoying but harmless. If it’s a dot that you can make bounce around like a pinball, it’s not worrisome to the health of your eye. If it’s a dark “curtain” that always stays in the exact same spot in your field of vision, it’s time to worry.
Don’t jump into vitrectomy, it is not an easy row to hoe by any stretch of the imagination. I was face down 4 weeks after my first one and 7 weeks after my second one. Get a good surgeon you trust, and follow his/her lead.
that’s good to know @auntlisa1103 about the ones that bounce like a pinball. I see those in a certain light. I had my peripheries completely burned out (laser pan retinal photocoagulation) about 30 years ago and no further retinopathy problems since.
That “curtain” thing means a possible retinal detachment, doesn’t it? That would mean an immediate call to the doctor if I saw it.
Yes, the bubble floaters, I can actually bounce out of my way by shifting my eyes fast, if you get what I mean. Those are harmless. The curtain in my specific case was the bleeders, but yes the could also signify a detachment. Either way, curtain most definitely means call your eye doctor.
Hey, I see my name mentioned here. It’s Cinderfella!
I haven’t been on this website for a while, mostly because I’m doing ok. I had a rough time of it for a couple of years with frequent eye bleeds that just would not stop, even after vitrectomy. In all, I have had vitrectomies in both eyes, tons of lasering in both eyes, injections galore of Avastin and the longer-acting Eyelea. Then I developed cataracts in both eyes. The dr had me wait until they got to the advanced stage before he would do anything about them, level 4+ out of 5 in severity. Then, finally, he thought my eyes were stable enough to withstand the procedure. I had one cataract done a year ago and the second one done this past March. I am seeing better now than I have in years. The only issue I have right now is a little bit of edema in one eye that causes some slight distortion, mostly when reading. The dr is currently treating the edema with an implant called Ozurdex. It goes in your eye like an injection but instead of being a liquid, it’s a solid that stays in your eye for about four months and gradually dissolves the medicine in your eye. You get a lot longer duration out of it. I can see it floating around in there every once in a while.
I walked into the retina specialist’s office back in 2010 with advanced, proliferative diabetic retinopathy. He yelled at me for letting it go so long. But, here I am seven years later. My dr. has done everything he can for me. I can still see, and I see pretty well. I would say I’m functioning at about 90 percent right now. I just have the bit of edema in one eye and the loss of some peripheral vision in the other eye from having so much lasering. I just recently started to drive at night again after not having done so for about four years. Also, I only need glasses for reading. I don’t need them for distance anymore. That means I can just wear regular sunglasses to drive.
I still have diabetic retinopathy. That won’t change but my eyes are stable and they are being maintained by a brilliant retina specialist. I’m going to be bummed when he retires some day.
Of course all this great outcome could change at any time, but neither eye has bled for a year. So that’s good enough for today. We’ll deal with tomorrow when it comes.
Never give up hope.