I’m more of a realist. I’m an optimistic realist, but I think, as a disease, diabetes is really profitable. Most of the effort and research is on treating us not curing us. Why? They’re making a ton of money.
Anyway, the likelihood of blindness is pretty low with this procedure. That’s why they’re probably going to do it because the risk of me getting a torn retina is now too high now that they see scar tissue forming along with a macular hole, and they want to make sure that it doens’t get worse. I’m glad they waited it out, but I was starting to get impatient because I looked learned that a vitrectomy was a possibility when this first started happening.
There are risks, but I’d rather take that risk than not get treated. I’m old enough to remember not having insurance, and I know how terrifying that can be.
I’m glad I’ve done a fair amount of research and that my team is top-notch, or I’d be freaking the heck out right now. I want to share so that others going through it know they’re not alone.
But, OMG, saying that is just alarming. I’m already freaked out enough. Keep in mind that what we’re sharing isn’t only physical but effects us mentally too.
Unfortunately, all my laser photocoagulation sessions have been massively painful, and my ophthalmologist explains that as due to the nerves in my eyes not having deteriorated as badly as the retinal vasculature. I can say without doubt that those sessions were the most profoundly painful incidents of my life.
Now, even though my A1c level has never been higher than the 4-range for the last decade, I have had to have four laser sessions, perhaps as a result of ‘hyperglycemic memory,’ in which hyperglycemia I had back in the decades before the mid-1980s, when the invention of home glucometers first made blood sugar control possible. There are also some published theories in peer-reviewed journals that retinopathy is caused by more things than hyperglycemia, and that genetics and continuing autoimmunity play a role, and there is nothing you can do about that.
Avastin is not without its problems, since some people, like one type 1 diabetic who has her own diabetes blog, had a stroke from it. For about a month after she could not speak very articulately, but now, fortunately, he articulateness has returned.
I was diagnosed in 1966, which was a banner for diabetes progress since for the first time, nephrologists became willing to accept diabetics for dialysis, and laser photocoagulation was developed for retinopathy. But shouldn’t we have something better than that more than half a century later, since all laser photocoagulation does is slash and burn rather than cure, amounting to little more than a new version of amputation to treat what cannot be fixed?
I think with time complications happen for a lot of us. It’s individual. I’m not a rogue diabetic either, so I don’t connect with the stories of “my sugars were out of control, and I almost lost my vision.” I’ve had some ups and downs, but I’ve tried to take care of myself. I do draw the line at certain foods simply because I like them and life would be miserable if I denied myself everything.
I’ve not had any negative side effects of Avastin except for the burning afterward, and the last time I had it, I realized the secret was just to rinse my eye thoroughly. The doctor who did the injection did exactly that, so while I was prepared for the burning, I didn’t have it and realized why.
I hope that if on Monday they confirm I need this surgery that it will go like the majority of them seem to go: complication free.
Hi everyone! I’m hoping someone can give me some info as to what to expect. My eye doctor diagnosed me with retinopathy two weeks ago and wants me to come back in 4 months for an OCT scan. There was no mention as to how bad it is and about all I was told was to keep my blood glucose under tighter control. My last A1c was 7.6.
Can anyone tell me what to expect from an OCT scan and, if warranted, what treatment normally follows?
Sorry for the lack of info but this is all new to me and I don’t mind admitting I’m really concerned about what comes next. Any info will be greatly appreciated.
There is no way for us to answer that question with any real accuracy. You should ask your medical team. If you have retinopathy, they’re encouraging you to get tighter control. Granted, my A1cs have been in the 6 range now for awhile, and this still happened. It really depends on each person, but a 7.6 is pretty high. You know the chart on that, right? It means your average at 7.6 is 170 mg/dl or above: Ultimate Guide to the A1C Test: Everything You Need To Know - TheDiabetesCouncil.com
OCT, What Is Optical Coherence Tomography? - American Academy of Ophthalmology, is just them taking cross-section pictures of your retina. I get an OCT scan 50-75% of the time I show up. It’s nothing really. Granted, now have had two hemorrhages in my left eye, and I go in every three months. I can’t comment on what treatment follows. It depends on what they see during an exam.
I’d do more research online. There is a TON of info out there. (Make sure it’s scientifically backed because there is also a long of junk in Google University) and check more threads.
But I definitely can’t tell you what to expect. It depends on a lot of factors and, ultimately, if your team sees changes that need treatment.
Interestingly, there’s a lot of data showing that rapid tightening of blood glucose control actually worsens rather than improves retinopathy, at least over the short term. Although in theory this should improve the retinal health over the long term, I doubt that they have taken seriously the fact that many patients with labile diabetes who struggle to achieve good control will have many rapid tightening of blood sugar control followed by many involuntary relaxations, producing a series of worsenings, all inspired by the effort to gain good control!
I think that would make sense. If you have type 1, and you’re struggling to keep your sugars controlled, then inconsistent patterns of tight control and then not-so-tight would average out then to a situation where your body is dealing with higher than normal numbers. Do you have links to the studies? That would be interesting to read up on.
I was gradually lowering my A1c and was hovering around in the low- to mid-6 range. It was going well, and the relationship and work stress kicked in. I’m still in the 6-7 range, but I’ve been lingering in the upper 6 range for a while.
We’re all doing the best we can. I’m happy that we have such great medical technology to help us. Granted, in the US they make it really hard sometimes to access it, but we have it and, for the time being, I have access.
Here is a recent review of the studies on the phenomenon of ‘early worsening of diabetic retinopathy’ (EWDR) after rapid tightening of blood sugar control. Since patients with labile diabetes who try to control their fluctuating blood sugars are always experiencing rapid tightening and rapid loosening of control, perhaps the effort to pull the blood sugar levels back from their high range may be doing irreversible damage which just accumulates over time.
Diabetes Metab. 2018 Feb;44(1):4-14. doi: 10.1016/j.diabet.2017.10.014. Epub 2017 Nov 11.
Early worsening of diabetic retinopathy after rapid improvement of blood glucose control in patients with diabetes.
Feldman-Billard S1, Larger É2, Massin P3; Standards for screeningand surveillance of ocular complications in people with diabetes SFD study group.
AIM:
To review the frequency, importance of and risk factors for “early worsening of diabetic retinopathy” (EWDR) after rapid improvement of blood glucose in patients with diabetes.
METHODS:
This was a systematic review of key references (PubMed 1980-2016) and the current international recommendations for the above-mentioned topics.
RESULTS:
EWDR has been described during intensive treatment (IT) in patients with uncontrolled type 1 or 2 diabetes, and after pancreas transplantation or bariatric surgery. EWDR arises in 10-20% of patients within 3-6 months after abrupt improvement of glucose control, and in nearly two times that proportion in patients with advanced baseline diabetic retinopathy (DR). While EWDR is often transient and predominantly driven by the development of cotton-wool spots and intraretinal microvascular abnormalities in patients with no or minimal DR, it can lead to irreversible retinal damage in patients with advanced DR before IT. Its identified risk factors include higher baseline levels and larger magnitudes of reduction of HbA1c, longer diabetes durations and previous severity of DR.
CONCLUSION:
Intensive diabetes treatment inducing a rapid fall in glucose should prompt vigilance and caution, particularly in patients with long-term and uncontrolled diabetes and DR prior to IT. Careful retinal examination should be performed in all patients before initiating IT; however, in patients with severe non-proliferative or proliferative DR, panretinal photocoagulation therapy should be performed promptly. During the year following IT, quarterly eye monitoring is required in patients at high risk of EWDR (long-term uncontrolled diabetes, previous advanced DR), whereas follow-up every 6 months can be applied in patients with short-term diabetes and no/minimal DR before IT. To date, there is no evidence that controlling the speed or magnitude of HbA1c decreases will reduce the risk of EWDR in patients with diabetes.
Thanks for this! Granted, if I have surgery tomorrow, this will have to wait to dig in to.
Looks like a gradual reduction of A1c is preferable to steep drops. Those going through surgery would be the ones with the least control to gradually lower vs. a steep drop. I’m not a medical professional, but a gradual tapering off of most things seems to be the best way to go.
Glad they’re looking into it, so all involved will learn more over time.
Thanks for providing so much information @Regina. I’m sorry that you’re going through all of this, but I appreciate you documenting your experiences. I worry about developing retinopathy someday, and your experiences have been very educational and helped me understand what to expect if that time comes. Thank you!!
You’re welcome, @katers87. I’m simply terrified to be honest. I sort of hope people get that. I’m in the thick of things right now.
I’ve been sharing mostly because it’s therapeutic for me to do so. When this started I had a boyfriend that was helpful if I was in distress, but he has his own issues with ADHD and other things. It was hard for him to support me in a way that was helpful.
I was on TuDiabetes before that relationship, and it’s always been a resource for me to learn and share. This is definitely sharing because, while we know we’re at risk for complications, it’s still scary and alarming when they hit. It’s nice to share experiences.
Of course, I hoped I’d not get any serious complications, but here I am. It’s definitely stressful. I’m actually going to break now to prep for my appointment today and prepare myself for having a vitrectomy tomorrow. I can’t say for sure, but I’m just assuming they’re going recommend I have this surgery.
Thanks. The discussion is sort of depressing me right now because I’m getting phone calls from my hospital about tomorrow’s surgery and posts are popping up about rapid A1c drops. Interesting info, for sure, but I’m a little to stressed to discuss it at the moment.
Please keep sharing then I’m glad this community is available too. It’s nice to interact with others who are dealing with similar concerns and experiences. It can be difficult for people without diabetes to truly understand.
Thanks. I made it through and now I have a post-surgical left eye. I can’t see a thing because they found a macular hole once they got in there just as they suspected. Now I have a gas bubble in my left eye and, while it will eventually go away, it’s been 2 1/2 weeks and nada. I just have to keep thinking that it’s 2 1/2 weeks closer to being able to eventually see.
There is a complication showing up, which freaked me out for about a week until I got an explanation that made sense. Because I can’t see with my left eye, it’s not lining up with my right. The resident on the team is who I speak with between appointments. She says my brain doesn’t have the data to direct my eye, so it should come back once I have something to look out beyond a gas bubble.
I hope she’s right as this is a vanity trigger. My eyes and my smile are two of my best features. Granted, if one has to go for me to keep my vision, fine. But I’d rather that not be the case.
No worries about eyes lining up. The same thing happened to me after not being able to see out of one eye for several months. Once I had the vitrectomy and could see, I was a bit cross eyed for several weeks. Eventually my eyes lined up again as the affected one got its strength back.
This C3F8 gas bubble is finally starting to be absorbed, but I think I’ve already got a cataract. Meh. That’s a side effect of this surgery. I’m just glad that it seems like I’m healing well from this vitrectomy. Let’s hope that keeps up.
Updating for the sake of posterity. I still have a tiny bit of gas in my left eye. I know is because I can see it. I’ve been going to my post-op visits regularly, and the last time I showed up my retina doc said my gas bubble would be gone in a week. Nope. It’s still here. I think with the size it is now, it will be gone in a week, but it definitely took me longer than 8 weeks to get rid of this C3F8 gas.
What I have now is a cataract. It developed really fast, so I have an appointment for a cataract specialist in a couple of weeks. The hope is she can get me scheduled and into surgery before my next post-op visit with my retina specialist, which is scheduled for 3 months after the August visit that I had a few weeks ago.
What’s good is when I close my eye to look out of my left now, I can see! It’s fuzzy, but I can see. I even have some of my peripheral vision back on my left. I’m not sure how good it is but for awhile it was real easy to sneak up on me on my left. What was funny was the handful of times I was in a store and didn’t see someone. Those first couple of weeks I had an eye patch, so it was obvious. However, for the last 6 plus weeks, 1) I’ve learned and 2) am really good with apologizing when I accidentally cut someone off. Of course, when I drive, I’ve been really careful to overdo driving carefully especially at the start because depth perception was definitely an issue. I gave myself a lot of space. I can even see large type. I can’t see small type with my left eye, so my right eye is now doing all the heavy lifting. I hope they can fix that ASAP.
Hi Regina! I just noticed your thread here - really interesting, and what a brave good natured person you are! I too have been through a lot of what you describe. -My left eye filling with blood, relentless zapping that took out my peripheral vision, a surgery to remove a goofy vessel that grew off my optic nerve into the vitreous like a sea fan. Avastin shots (I used to make my husband let me squeeze the crap out of his hand instead of yelling) Then they nailed half my right peripheral vision, sent me in for vitrectomies, left, then right, and finally cataract surgery. And TaDa! I can see pretty damned well, considering! I’m really glad you have a good team you trust.
I loved how bright colors looked after the cataracts were gone. Especially blues and purples. Anyway, I hope your results are terrific, sand that you keep your 20/20 vision. My eyes have been stable for the last 6 years now, so things can calm down.
I’m glad this community is available too. It’s nice to interact with others who are dealing with similar concerns and experiences. It can be difficult for people without diabetes to truly understand.
I still have a tiny bit of gas in my left eye. I know is because I can see it. I’ve been going to my post-op visits regularly, and the last time I showed up my retina doc said my gas bubble would be gone in a week. Nope. It’s still here. I think with the size it is now, it will be gone in a week, but it definitely took me longer than 8 weeks to get rid of this C3F8 gas.
(I used to make my husband let me squeeze the crap out of his hand instead of yelling) Then they nailed half my right peripheral vision, sent me in for vitrectomies, left, then right, and finally cataract surgery. And TaDa! I can see pretty damned well, considering! I’m really glad you have a good team you trust.