New member here just looking to connect with fellow eye sufferers. Basically my R eye has been treated with complete laser for PDR 7 months ago but continues to bleed every 2 months. My vision is 20/20 until the bleeds and then instantly goes to full "lava lamp" vision as my fills with dark, coffee-like blood. It takes 1-2 months to clear and then boom it happens again. I can't tell you how completely frustrated I am at this. I have been diabetic for over 30 years and have had A1c's <6 for the past 20 years. I eat low carb (Bernstein solution), avid runner and cyclist, basically do everything right and still have to deal with this crap. My retina specialist had maintained that this cycle will stop but after my latest bleed a few days ago he is now seaming to change his mind and is considering a vitrectomy. Has anyone here had this type of experience with PDR? Did the bleeds eventually go away after extensive laser or was a vitrectomy the only solution? Thanks for any insight and nice to meet you.
I had a vitrectomy on my left eye in 2009. It was the best decision in my life because I can SEE. Laser’s stooped the bleeding in my right eye. The only issue with the surgery was the side effect of the vitrectomy was a cataract. Once I had the cataract surgery, I regained depth perception and my eyesight was returned. I am lucky, I had a superb group of doctor’s and an incredible opthamologist. I also live in Oregon, it rains a lot but anywhwhere else I’d be blind right now. All I know is the bleeding won’t stop. The only reason my sight is good is because of a combination of lasers and a vitrectomy. Check out the procedure, it is gruesome here: http://www.youtube.com/watch?v=4FJYeEGl98g
Good luck with this, I hope you are as lucky as I was after 30 years of JDM, get the vitrectomy and keep your BG’s as normal as possible and you will SEE better.
Thanks for the reply Jason. Yes I am confident with my retina specialist. He is very good and has a great reputation in my area. I am also very familiar with the procedure itself as I have studied up.
You said "All I know is the bleeding won't stop". Do you mean currently or before you had the vitrectomy?
Did your bleeding stop completely after the vitrectomy? Did you receive additional endo-lasering during the vitrectomy as well?
See this is what is so frustrating to me about stories like yours. You have done everything right, and still have to deal with an issue like this? Can I ask, have you been going to the retina specialist for a long time, or just when you noticed vision problems? I assume you have regular checkups. I also assume your blood pressure is awesome. Retinopathy is such an illogical affliction sometimes. I am sorry to hear about this, and hope it clears up soon. Vision is such a scary thing to have fluctuate. Keep us up to date about your situation, and best of luck. Sorry I could not add anything useful. ;-/
Hang in there.
Thanks for your support. I had been seeing an optho all my life for yearly checkups and got the same story, "Eyes are doing great, see you in a year". Then in a period of 11 months the retinopathy developed. I woke up one morning this past April with a red spot in the top corner of my vision. Rushed to the Dr. and was diagnosed with proliferative retinopathy and received laser the next day. Since then I have had numerous bleeds that don't seem to be letting up.
Long story short, my long-time optho and I did not click as he did not want to take time with me to help me understand and work through this. He was in a hurry to laser my left eye as well which has NO proliferative vessels.
So I have found a great retina specialist who is handling my case now, and I trust much more. The takeaway here is search for a good Dr. before having any complications.
BTW: My BP and glucose control is excellent and has been for many years. When I was a teenager (20 years ago) my control was not very good for some time and now its back to haunt me I suppose.
I can understand us all not having great control in our teenange years. I am 37 now and had T1 for 32 of those. I was terrible as a teenager. So you went from not having retinopathy to having PDR? Sorry just trying to clarify. Or did you have NPDR first? I know it can skip stages, from what one eye Dr says, but that surprises me as it goes against what all the literature says in terms of such a drastic change. I have had background Mild to Moderate for years with no progression and to be honest you have better A1cs and health habits than me. ;-/ Huh. Do you do exercise that causes pressure on your body/eyes? Meaning do you lift, or are your exercises very stressful? I only ask as once you have PDR you should be careful about exercise intensity. Sucks I know, but thats why I am trying my best to stay in Background retinopathy if I can. Man, again, let us know how it goers. We are here to talk anytime. I am SURE though, that it will be ok in the long run. You are doing everything right.
“All I know is the bleeding won’t stop” meant MY eye would not stop bleeding, or become clear enough for vision without my vitrectomy. So far I have noticed none of those horrible “black” spots. During the procedure I believe lasers were used. Many times laser treatments were used in my right eye. I gave you that you-tube link because most can’t believe it when I describe a vitrectomy.
I had mild background retinopathy as a teenager but all cleared up according to my doc. He reported I had no signs of any retinopathy for many, many years. My exercise routine hs been very intense for many years as I did competitive cycling and Brazilian jiu-jitsu. the past few years I run, cycle, or lift weights routinely as this has been key to keep my blood surgar normal.
The funny thing is that the amount vessel proliferation is actually quite mild and not near the disc at all. it just seems like what is in there likes to bleed like crazy for some reason. Both of my Drs say that it will bleed when it wants and there is not much I can do to avoid or prevent it.
Everytime I have bled has involved NO physical activity at all. Just sitting there calmly and it starts up. Absolutely sucks.
Man, that sucks. I have never heard of this kind of bleeding before without some warning, so forgive me my questions. Here is a funny thing to consider though. Lots of people mention mild retinopathy resolving. I think some eye drs see that the microanaryisms resolve and assume they got better. Much of the time, they disappear because the capularies dropped out. So sometimes it does not mean the retinopathy is not there, just not terribly visible. Not saying at all that is what is in your case, but it is something I think about. Don't quote me, but it was a bit of info I found after years of looking up if early changes actually resolve.
But depending on the weight you do, there is always a potential for rupture based on the simple fact your vessels are weakened because of the years of background retinoapthy to begin with. I just have moderate NPDR and avoid heavy weight because sometimes I will get a cotton wool spot if I push too hard. Maybe do higher reps and lower weight until you can get it resolved. I am sure it will. Keep us posted.
By the way, this sort of supported the idea that the stages of Retinopathy are not in order sometimes. From 0- to PDR.
"The stages of diabetic retinopathy are not necessary sequential, that is, a patient may have no retinopathy and then 6 months later, might show signs of having proliferative diabetic retinopathy. Diabetic retinopathy may skip stages."
This guy is amazing. Contact him as he is one of the few who actually respond to online questions.
Hey Pryde, keep us updated on the eyes. Hope things are going well. ;-)
I am having it done tomorrow morning. My eye has actually cleared a lot as it always does; however, I am going through with it as I am tired of recurrent bleeds.
I don't think I am suppoed to be on the computer for a while afterward so I will update everyone when I can.
I hope your vitrectomy went well.
The purpose of the vitrectomy is to remove blood that may prevent the PRP and/or to remove traction (often described as scar tissue) on the retina.
It is the PRP, that is, the laser, that will keep you seeing.
All the best,
Hi Dr Wong,
So happy to see you here! Please everyone, feel free to discuss any of your concerns with Dr Wong, he is one of the few Retina specialists who uses the internet to help clarify questions we might all have. He has been a god send to me personally and has a great way of explaining procedures in a clear and objective but reassuring way. I suggested once he might be of help here on sites like this, that really do need the resource of someone in the medical field. I am glad he took up the challenge... Too much unfiltered info out there. This is a great opportunity to get your concerns and fears discussed out in the open. Knowledge is power guys. Thanks for coming Dr. Wong!
Thanks for replying to my post. Unfortunately my vitrectomy has not gone well. The procedure has left me with significant cystoid macular edema with resulting 20/400 vision (I had no macular edema before the surgery). 6 weeks of Acular and pred-forte drops with NO response. Last week received a Kenalog injection with NO response so far.
If that’s not enough, I somehow also "developed" a corneal defect in the same eye which is not healing well with a contact bandage.
In short, my vitrectomy has been a disaster. Maybe I am over-reacting but I feel like my R eye is lost. I have been wearing a patch since surgery because the vision is so poor.
Any advice or insight would be greatly appreciated. I am a medical professional (OT) and have extensively researched my eye conditions so feel free to use appropriate medical terminology.
Thank you, Jeff
Wondering about more details of the surgery. Unfortunately, good vision beforehand doesn't always guarantee the postoperative results. Did you have some element of retinal detachment?
Before, during or after the surgery?
No evidence of retinal detachment at all. According to my doc, the procedure was as "simple" as a vitrectomy can get. Just removal of vitreous, membrane peel, small amount of additional endolaser. Also, he used 25g instruments
Before the PPV I had a SMALL amount of NVE that was treated with laser (tight pattern, good coverage) 1 year prior but unfortuntly continued to have persistent bleeds every 2 months or so. My vision was 20/20 otherwise, even when the bleeds cleared up.
Since surgery 7 weeks ago, my vision is like looking through cloudy wax paper with a mild distorted visual field, in other words not functional at all. Obviously, I deeply regret the procedure but am holding onto hope that things will improve somehow.
Anything you can add is very mcuh appreciated. BTW. I am 39, diabetic since 5, great glucose control for most of my life (A1c <5.5), otherwise healthy with no other complications.
Thank you kindly
My thoughts are possibly;
1. Persistent vitreous hemorrhage
2. Recurrent/progressive epiretinal membranes.
One other point.
In general, a vitrectomy with laser, and membrane removal, if needed, is usually a very safe procedure. In my experience, most patient and thier physicians wait too long before considering surgery.
Good/excellent vision, unfortunately, is not a prognostic indicator of outcome, that is, the vision can be great, but the disease is advanced.
Thank you Dr. Wong,
Do many of your patients get CME after a vitrectomy? Wouldn't my specialist be able to determine if a cataract, epiretinal membrane, or vitreous hem would be a cause of the poor vision in addition to the CME?
I know it is difficult for you to determine but would you consider my prognosis poor based on what you know?
You must have had at least a "similar" case in all your experience, no?