It looks like this group isn't that active, but I'm hoping someone can help. I had a large hemorrhage due to PDR about 3 weeks ago. My vision began to clear and I've gone through 2 rounds of laser (around 900 spots), the last was a week and a half ago and my ophthalmologist wants to wait another month to see whether I'll need more. The bleeds/floaters seemed to stop after the first round, but over the past few days I'm seeing more pinpoint sized floaters and a couple of wider streaks. I have a call in to the doctor, but do any of you know whether this is expected or a sign I'll need more laser next month? Should I actually go in sooner for more laser?
Oh dear, really sorry to hear I can’t help as my PDR & laser experiences were different. But I’m thinking of you and hope someone here can help. I would be inclined to call/see my doctor ASAP with this latest info…I really hope you get it all sorted and stabilised for the future. x
I have been undergoing treatment for about eighteen months. Last month, I mentioned that I'd been having a lot of floaters lately. My retinologist wasn't too concerned. He mentioned that they may just be spots of blood from broken up hemorrhages.
Thanks Amanda, that's reassuring. I've been Googling (big mistake, I know) and seeing all kinds of horror stories. Today I'm seeing an infinite number of pinpoint gray dots floating in front of my vision, nothing obscuring luckily but still disconcerting. I was so happy a couple of weeks ago when my optho told me we were done for at least a few weeks, but now I see you've been at this for 18 months. Blah, can't wait for this all to be over, but of course I'd do this forever if that's what it took to save my eye.
If you haven't already done so, I'd give your doctor's office a call and tell the receptionist what has been going on. She can help you decide if you need to come in immediately, talk to the doctor, or whatever.
Thanks, I actually did call this morning and he wants to see me first thing tomorrow AM. Which freaked me out a little. :/ I'll update after tomorrow. Thanks again...
Ach, it’s for the best to get it seen ASAP (though I know I’d be freaked out too!). I’ve been thinking about your post and realise I get swathes of little grey pinpricks in my vision, and along with other things floating around, it’s all ‘debris’ & nothing to worry about or be treated for. I’m not happy seeing these things but at least no bleeding. Let’s hope yours is the same.
Just an update: It turns out that what I'm seeing is just the hemorrhage breaking up throughout my eye. It looks awful right now, even worse than it's been all week, like trying to see through smoke that wafts around my eye whenever I move it, right in the center of my vision, which makes it almost impossible to read unless I blow up my screen, and hard to drive. (My other eye is already low vision because of macular edema and PDR several years ago.) But it's not retinal detachment, which is what I was most afraid of, and it should dissipate in time. Now I just need to figure out how to get through the next few weeks (or however long it takes) with the amount of vision I have at this point...A huge relief, and I'm so lucky and grateful that it's nothing worse, but still kind of hard to deal with at this point.
Thank you all for your insight!
Thanks for letting us know the update. I’d be upset as well as relieved but somehow you have to live with it and think long term that it will clear and improve. Still tough, I really feel for you. All best wishes to you Elizabeth. x
What is PDR?
Googled it. I'm sure you assumed every diabetic understood these particular initials, but I didn't. I'm used to PDR meaning Physician's Desk Reference.
I would find a retinal specialist, maybe located in a large city. In Birmingham, AL, we have an entire hospital with the finest eye specialists. I would not take a "wait and see" from just any ophtho. No way.
An update: I had a major hemorrhage (the morning of my daughter's fourth birthday party, great timing!) which is completely covering my central vision. My opthalmologist now tells me it's probably not going to clear on its own, that my only option is a vitrectomy. (Yvonne, he is a retina specialist, he actually did a vitrectomy on my right eye years ago, but no longer performs them for some reason.) So I'm seeing a new doctor next week and surgery will probably be scheduled for Tuesday. It's something I wanted to avoid, obviously, but I'm just grateful that it's possible, and that I'm going to finally get my vision back.
Noooooooo, so terribly sorry for you. (I’d assumed your ophthalmologist was a retina specialist as, if it’s anything like in the UK, he wouldn’t’ve been able to even perform laser on you, without being a senior retina specialist). I know lasering itself can aggravate the fragile blood vessels and cause more haemorrhaging, but neither you nor the specialist will know that will happen until it does. Looks like you’re going thru a bad patch with the PDR for a while right now Presumably if new vessels are still growing and they or older neovascularisation are continuing to bleed, he’ll laser them further when you’re under for the vitrectomy? How’s your BG control? Any idea why it’s all taken a nosedive recently? Few other things to be careful about which can progress PDR - aspirin (& any other blood thinners - beware, don’t take!), anaemia - get iron levels checked, avoid any stress/pressure in head (like straining on toilet if constipated - consultant told me that! - or inverting head like in yoga or similar), dehydration is bad too…maybe you know all of these?? In which case apologies. I live with a bunch of neovascularisation which never responded to laser and which can bleed at any time, so I try to be careful about all the above, and I don’t fly any more as last time gave me new bleeds 4 years’ ago.
You’re right, we must be grateful that at least nowadays we have treatments and don’t automatically go blind.
All the best for your op, hope all goes well and stabilises afterwards.
Thanks Ingrid, and thank you for all the advice. Some of it I knew, I am anemic even though I take a pretty large dose of iron, So I'm considering upping the dose even further to see how my body responds. After all these years being stable (just very mild ME in that eye), I have no idea why things suddenly exploded (literally, haha.) My A1C has been under 6 for the past 14 years, although I went through a bad stretch in my teens, and was diagnosed at 2 before there was blood testing, so it all adds up. The only thing I can think that's changed is I started taking B12 supplements...Since then my kidney function (also stable for 14 years) declined and then this happened...and I've read since that B12 has been linked loosely to kidney issues. Obviously I'm no longer taking the supplement, although who knows if that was at all related.
I didn't know to avoid inverting my head, I actually do yoga classes so that's good to know! This bleed actually happened while I was just sitting on the sofa, but about 10 minutes before I'd been vacuuming/moving furniture, so it may be associated with straining.
Luckily I've been through a vitrectomy before so know what to expect, and my eye has been stable for many years since then...So in some ways I'm almost looking forward to this.
I'm glad to hear you are in good hands, Elizabeth. I've had some very bad experiences with incompetent doctors.
Sorry this is happening to you. We would like to think that keeping our blood sugar at good levels will prevent complications, but I wonder sometimes. I watch mine pretty carefully, but still I wonder. Good luck.
Just wondrin’ how you’re doing? Have you had the vitrectomy now? All ok, so far?
I know what place you’re coming from with 42 years of the big D myself, so, yes, quite a few years of bad control with no blood testing available (& childhood/teen years with crazy lifestyle & very bad control followed by struggles with various eating disorders since). I started pumping and been trying hard since PDR diagnosed but all takes its toll from those many crazy years…
Lifting furniture, unless very light, a definite no-no. I was advised not to lift anything moderately heavy, including boxes, shopping, furniture…and with yoga I’m careful with any posture where my head is lower than my heart. So e.g. I do downward dog by elevating upper half of my body first - 2 blocks under each hand - and not holding anything too long if I sense any pressure building up in my head (worse in hot weather). Standing forward bend only to ~90 degrees. Defo not ever shoulder or head stands. It’s a right pain having to avoid or adapt poses, and I do sometimes get tempted to give something a go briefly, like plough, but know I shouldn’t risk it really.
I’m hoping it’s good news so far, fingers crossed.
I did not know that about B-12 supplements. I've sworn off all supplements. I got a 5 mm kidney stone from vitamin D. True. The urologist, who was in with 13 urologists, asked me if I'd ever had a kidney stone. No. Had anyone in my family ever had a kidney stone. No. Then it was the vitamin D. A cat scat was given in the ER, so no one made this up. I can no longer take any vitamin D supplements. Great.
Be careful taking additional iron supplements before you talk to your doctor about this. Too much iron can cause problems as well.
Arrrrgh I forgot to say the same - didn’t know that about any of the supplements either! I’m vegan & take B12 added in yeast flakes which I use every day, and B12 tabs occasionally too. I’m also permanently prescribed high dose D and iron by my doctor (GP, I think MD is your equivalent?) but my D consultant gets my levels of all these checked regularly.
I wonder how safe any of these are if you get your levels checked to make sure they’re neither too high nor too low? I’m a bit worried now!
The doctor who prescribed vitamin D for me had tests run, too, but it's listed as one of the side effects. I looked it up. I worked for a pastor once whose grown son ended up in the hospital. Turned out he was dosing himself with iron supplements and had too much. I've asked my doctor not to prescribe anymore generic lipitor with calcium. I've read that some kinds of calcium supplements can give kidney stones and some can cause heart attacks. No thanks.
I heard that fish oil can cause an aggressive form of prostate cancer. The list of bad side effects from this go on and on. One doc on TV said, eat the fish twice a week. She didn't say this, but I found many other foods have Omega 3 in them.
Thanks for asking for an update…After seeing the new ophthalmologist on Monday, he recommended waiting 2 weeks because there was a small chance things might start to clear up. Since then I’ve had another hemorrhage and things have gotten worse, so I’m almost definitely going to have surgery a week from next Tuesday. I wish I’d just done it this Tuesday and gotten it taken care of! Right now my eye looks like it’s blocked by reddish gray storm clouds, except for a black blob on top (where the blood has pooled) and a blurry, clearer circle in the middle. I’m ready to be able to see again.
As for the vitamins, I take both vitamin D and calcium since I have bone issues, as well as a ton of iron since I’m anemic. Hmmm…I thought they were pretty safe! Can you tell me the effects of too much iron? I also take vitamin C supplements, as well as two forms of vitamin E. I was taking a multivitamin as well, but stopped recently because I figured I was getting enough from all the individual vitamins. I also take an Omega 3…Now all of this is worrying me!