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First of all, I'm 31 and have been diabetic since I was 7, so I guess I'm overdue for this. I went to the opthalmologist in June and was told they wanted to do further tests; went back in September and found out my retinopathy (which has been mild for about four or five years now) is rapidly increasing and I need treatment.

A couple of weeks ago I had a needle of Avastin which is supposed to stop new blood vessels from forming and tomorrow I have to start laser treatment.

I'm pretty scared about the whole thing, and about my eyes in general as I'd rather have any other complication than blindness.

Anyway, just wondering if any of you have had retinopathy treatment and how it went, what happened afterward, stuff like that. Or, if there's already a thread on this, let me know... I tried searching the forum but didn't see (haha) any such thread.
 

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Welcome to the forum, Random. I'm truly sorry to hear about your vision changes, and although I don't have retinopathy (yet!), I have two eye diseases (macular degeneration and vitreomacular adhesion) in both eyes that have begun compromising my vision. I've not yet had a bleed, but belong to an amazing list, re macular degeneration, where people have other retinal eye diseases as well.

Avastin is extremely effective in stopping bleeds in macular degeneration and many people see a slight improvement in vision after treatment. They do then tend to need regular injections for a while to maintain and stay ahead of future bleeds, but it's a superior treatment to what was available for my mom (only laser). I'm not at all knowledgeable about the specifics of retinopathy treatment however.

I agree with you about our eyes. Always said I'd rather lose my legs, hearing, anything but my eyes. It has been helpful to read the inspirational stories and perspectives of others at the link below. Although the main focus is macular degeneration, the list and site deal with retinal diseases and there are many similarities with vision issues, certainly in coping strategies, resources and emotional impact. Here's the site if you wish to poke around - lots of courage found at "Art and Writings by MD People" clickable on the left side of the page: MD Support You'll get lots of links putting 'retinopathy' in the search field, and also in the search field of one of the links found there [Research to Prevent Blindness] Diabetic Retinopathy
 
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I'm 1year on uncontrolled D-2. I was beginning to get as small as dew drops, dots in my vision which would appear and disappear everyday and reappear at another spot. My vision is extremely clear, i just notice it when i start to read the newspaper or read e-mails on my computer, then i notice them. Especially when reading on white background.

I just went to the eye-hospital 2 days ago to do a check-up, the doctors confirmed nothing is wrong and there's nothing to worry about. I have been in worries for a few months that i am going to go blind from D-2, now its gone and yesterday i joined this forum to find solutions myself.

I just got to be in control, i may not have to worry then if its in control. :)
 

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Anyway, just wondering if any of you have had retinopathy treatment and how it went, what happened afterward, stuff like that. Or, if there's already a thread on this, let me know... I tried searching the forum but didn't see (haha) any such thread.
Same thing i don't see much for retinopathy here.
 

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I'm 1year on uncontrolled D-2. I was beginning to get as small as dew drops, dots in my vision which would appear and disappear everyday and reappear at another spot. My vision is extremely clear, i just notice it when i start to read the newspaper or read e-mails on my computer, then i notice them. Especially when reading on white background.
After I had a retinal detachment about a year ago, I was made aware that the black specks I'd been noticing in my vision were sometimes a precursor to a retinal detachment. Now the tears & detachment are all firmly reattached & repaired, but I'm left with the specks. They're only noticeable to me on the computer screen, so I guess it could be worse.
 

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Hi Random!

I don't post often here, usually just lurk for info and advice. But I felt I needed to post now, because I've been through retinopathy and the laser treatments myself. I was 34 at the time, so close to your age. If my experience can help you out in any way, I'm glad to share. I know I was confused and worried when the scenario was staring me in the face.

I had the treatment done in both eyes, 3-4 treatments per eye over a course of a few months. The first treatment, he just used a numbing gel on my eye, but I found the procedure quite uncomfortable, and couldn't tolerate the full treatment. Apparently, that's more common in "younger" patients. So, for the remainder of them, I had a needle (retrobulbar) to freeze the eye. It's not IN your eye, it's just below it. There's a slight feeling of pressure, but no real pain. You wait about 20 minutes for it to fully take effect. For me, my eye and surrounding area went completely numb. It makes you lose sight temporarily in that eye, but my treatments were completely painless after that, and I just wore an eye patch for a few hours after the treatment. Once it came off, I was blurry for a little bit, and saw some light flashes (especially at night with my eyes closed when I was trying to sleep), but it cleared up back to normal by the next day. I did have to get someone to drive for me for the next day, though, just to be safe. This was purely precautionary.

I was told that the treatment would affect my night vision, peripheral vision, and color perception. Realistically, though, it's not anything hugely noticible to me. I can say I seem a bit more sensitive to very bright daylight, and I seem to need more light at night to see fine detail and subtle color differences, but nothing that affects my functionality. I still drive and do all the regular things just fine. I can notice some "spots", which my doctor says are the scars. Usually this is when I'm reading black text on a white page, I notice that some areas of the lettering aren't sharp and black, but a bit fuzzy around the border, and grey. Again, though, it's minor and not very limiting. More like an interesting side effect. I still read a LOT! Fatigue does affect it though, and it's more noticible when I'm tired.

I think the key is having a great (in my case FANTASTIC) sprcialist, who will explain things and make you feel comfortable about the procedure. Two years post-treatment, my doc says my eyes are doing great. Vessels receded nicely (though one eye was more stubborn and took longer). No more fluid leaking, no new growth. No signs of retinal detatchment. The scars from the laser are still visible to him, but I really don't notice many floaters or black spots at all.

I hope this helps you get a bit more comfortable with the whole thing, Random. If you'd like any more info, of just to vent some fears, feel free send me a message.

Cheers, and good luck!
 

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Huge thanks for de-lurking, LC . . . after three eye surgeries of my own, I will hereafter be requesting the retrobulbar block if I ever have to go again. Even on the operating table, half asleep from light anesthesia, I could feel myself trying to shrink into the table away from the pokes & jabs to my eye. And the piercing bright lights are as painful as anything.

You sure nailed it about the doc being a well-qualified specialist. My retinal detachment was about the worst I'd encountered - husband said I was in as bad a shape as he'd ever seen me in 25 years. But the doc was terrific & followed up ever darn day for a week - meaning we had to make a four-hour round trip to see him every day that week. I might not make that effort for just anything, but to preserve my sight? Durn tootin'!
 

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I just had an eye exam yesterday first since my operation 2 yrs ago. The doc suprised me when said he saw a hemorrhage. Don't know when it happened but guess its when I was taking the Cordorone for my heart. He said it was healed and there was nothing for him to do. Wants me back in 6 mths to check it again.
 

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I've had several Avastin shots, they work very well. I go to a retinologist . At first they induce a dye into your system to view inside the eyes and to obtain a contrasted pictures.

Then they prepare the eye for injection. Attach a spreader to prevent closing, lean your head back and inject. Very fast, a bit un-nerveing at first, no real pain.

Simple side effects ...Usually a red spot or bigger at injection site. Then bubbles inside of eye ball for a couple of hours. Antibiotic gel and drops for home treatment.

Follow-ups every 6 weeks with more injections until no longer needed. No experience with laser..
 

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Please be aware, there is an interventionsl clinical treatment trial, which has been effective in halting and even reversing the devastation of retinopathy.
Research pulatile iv Insulin therapy at the clinical trials page on Diabetes and Mississippi. They are recruiting participants. There are no new drugs involved, just the insulin you most likely use already.
 

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Hey there. So sorry to hear about your recent eye issues. I too have retinopathy and have had all the laser possible and also have had two vitrectomies (Surgery to remove blood from burst vessels.) It wasn't looking good for a while there and I even became a client of our national institute for the blind. During that time, I was t-e-r-r-i-f-i-e-d. I too felt the same way about that being the worst complication. But then I got to thinking...if my kidneys went, I could have a horrible quality of life and even lose it. (My life I mean.) And then going blind didn't look quite so bad. This was a long process and I still fear going blind one day. It is a very real possibility. But with the other complications I have going on, on top of the retinopathy all I can do is take it one day at a time, get the best control I can, and not give up. Until I have no breath I will fight!!! The good news is that since my surgeries on my eyes they have stabalized (although I have another appt. in two days so here's hoping...) and I am choosing to LIVE! as a SEEING person for as long as I can! So please be encouraged. I totally "get" it!
 

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Discussion Starter · #14 ·
Wow... I had given up on replies. Thanks for sharing, everyone.

I had the Avastin, which was pretty traumatic and unpleasant but thankfully didn't take that long. The laser part is less unpleasant though still far from comfortable. I think the flashing light is actually worse than the pain, since I constantly have the impulse to close my eye to avoid it and of course I can't.

I haven't noticed any changes in my vision except I seem to have some blind spots now in that eye - nothing serious, and not even noticeable when I have both eyes open. No changes in night or peripheral vision.

It's encouraging to hear that some of your eyes have stabilized afterwards - I know there's a good chance I may need surgery again eventually, especially as I don't have the best blood sugar control (for lots of reasons which I won't elaborate here), but I'm hoping this doesn't become *too* much of a regular thing.

Anyway, thanks again. It's all pretty scary to me and I'm definitely looking for some light at the end of the tunnel (which is a pretty appropriate metaphor for this situation, I think).
 

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Preserving our vision may be the number one factor driving many of us to control our blood sugar. The very thought of blindness fill us with enough dread to keep a tight rein on our diabetes. You're getting a very real wake-up call, Random!
 

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New patient

:confused:

My 40 yr old husband woke up on Christmas Day seeing blood and fog in his vision. No previous warning signs even with yearly eye exams. a trip to the emergency room and several eye referrals later, and we now have a diagnosis of proliferative retinopathy, stage 4. He is worse than legally blind in both eyes and we have a vitrectomy scheduled for the worse eye next week. He got the injection of Avastin yesterday and was told that the other eye can wait till the blood settles before laser surgery is performed. We are devastated and shocked at the suddenness and unexpectedness of what we now will be facing. Thanks for the advice about the retrobulbar injection. I will be sure he gets that prior to the laser treatments. His surgery will be under general anesthesia so no need for it then.
Doctors that we have seen are not as optimistic as I would hope but I have not read a story about these treatments with a bad ending yet. Thanks for the hope you have given me.
 

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Oh taz, this must have been (and be) devastating for you both - I'm so very sorry to hear this. What a shock.

I'm on a mailing list for macular degeneration, but people there are all ages (one girl a young teen who medals in horseback riding competitions!) with varying degree of blindness and auxillary eye diseases. What I can tell you, is that I am in awe of the human spirit and our ability to adapt and thrive regardless the challenges that are tossed us. This doesn't help right now, I know this, when you're in the thick of what you're going through, but it somehow helps me in my own preparation for loss of vision to hear and read about the courage of others, and how lives keep being lived, not marginally, but fully.

Vitrectomies can be quite successful - and I know your husb has a helluva lot of people pulling for him. You can count on us doing that right here.
 

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Taz,
I'm send up some smoke signals for your husband and you.
peace and good Karma be yours
Tal~
 

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Hang on, Taz . . . and keep us updated on how this is going. Positive thoughts & prayers for you & your husband.
 
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