Retinopathy

Coping & Support
1

I also developed retinopathy in both eyes after a sudden drop in A1C levels. I've had diabetes for 20 years, and was very out of control during my late teens/early 20's. I developed a severe case of Neuropathy and was pretty much bed-ridden for 8 months. After I got my sugars in control I developed the retinopathy. I've had laser in both eyes, 1 vitrectomy in my right eye, and 5 in my left!! (This was all in less than 2 years). I've also had 2 retinal-attachment surgeries in my left eye. I am now basically blind in my left eye due to all the surgeries and scar tissue. My right eye is in good shape. But please, please be careful with your vision and even with surgeries. I never believed any of this could happen to me, but it did. Now I'm doing all I can to stay healthy and keep the sight in my right eye.

This is my first post and I would love to talk with any of you about anything!

2

Hi and welcome. I'm so sorry you've been through so much. I went through quite a bit in my early 20s, but came out relatively unscathed.

How long have you had diabetes? How are you doing now? Hope you feel and are well.

Cora

3

Hi Cora,

Thank you for the welcome. I have had diabetes for 20 years, I am 26 now. I'm in relatively good health now, despite the partial blindness. I have adopted a fairly intense healthy living lifestyle (exercising, healthy eating) and I've found that it's really made a big difference with my blood sugar. I tend to run high and it's a full-time job keeping under control, as I'm sure you know! I've also been using the Omnipod pump for a few years now and that has made a huge difference as well.

How long have you been diabetic and what did you go through in your 20's?

Sarai

4

Sarai-

Oh my word, you scare me half to death. You and I are the same age and we have had diabetes the same amount of years. I lived the same life in my teens, in fact I feel pretty safe to tell you that I was out of control about 14 of my 20 years of diabetes. Thankfully only about 2 years ago was diagnosed with stage 2 retinopathy that we think was caused by a sudden drop in blood sugars and it has been doing good over those two years. I see the eye specialist next week for my follow up for this year. I'm praying they have either gotten better or haven't changed. He is really not concerned with them. I'm currently working tirelessly on continuing to lower my A1C. I was at an 8.7 about a month ago and am hoping for a 7.0 in a few weeks. My husband and I want to try for a baby before my diabetes decides to throw any more complications at me. I am so sorry that you have gone through all of what you said. I could never imagine being blind at our age. My parents constantly told me that I would end up blind and missing a limb by 30 if I didn't change my ways. It took me all the way until my 22 birthday to finally decide that I wanted to take better care of myself and the best has been this last year. Something must have finally clicked.

I will keep you in my prayers for healing so you don't have to worry any longer. Don't stop sharing your story! The teens around us need to hear it from someone who has actually been there before!

5

Hi,

I literally just found this page and joined!  I've had Type 1 diabetes for 40 years now (since age 3).  I tell people that instead of doing the drugs/alcohol rebellion in my teens, I chose the Hostess rebellion.  Yodels and Ring dings were my favorites!!  Then, in college, I did discover beer and doritos.  So, I was pretty much out of control for several years too.  I could probably count on one hand how many time I checked my blood.  How I never ended up in the hospital, I will never know.  But I did get complications (retinopathy).  I've several laser treatments in both eyes.  Other than local driving, I can no longer drive at night.  It's like a bad Pink Floyd laser show out there!!  Since we set the clocks back an hour, it's dark by 4:30, so I have to make sure all my errands are done by then.  

I would love to go back in time and slap myself.  It's so hard going through your teens and college with this.  I know it's not a fun fest at any age, but growing up is hard enough without worrying about all this diabetes stuff.  But, unless you're a diabetic, you don't really get it.  

I hope you're continuing to do well!!

JoanneP

6

I am almost 24 years old and have been diabetic for almost 20 years now. In the last few months I was diagnosed with retinopathy in both eyes. Other than that I do not seem to have any complications (cross my fingers) although my kidneys occasionally have some tests that have to be watched. Throughout my teens I generally ran with 12 A1Cs and then in college it all went crazy and I hit a 15 once. When I turned 21 I started working really hard to gain control back and a few weeks ago hit a 7.8.

I was glad to see a support group for individuals around my age with retinopathy. My parents told me for years that I needed to gain control because of the damage that could happen and I guess like most teens I thought I was invincible. Now that I’m in my early twenties putting my life in order and looking at getting married and having children I am nervous as to how that will work with the damage that has been caused. Does anyone have any insights as to the ability to have a healthy pregnancy and what kind of damage that can do to someone who already has retinopathy? Right now my eyes do not seem horrible to me–I can still see out of both eyes, and limited night blindness (I can drive at night but feel uncomfortable outside of my hometown). I get eye injections every 4 weeks right now to try and limit the damage. I am still working on getting my A1C down to 7 and then hopefully to a 6.5 without the lows.

My biggest concern right now is to be able to have children, have a healthy pregnancy, and retain my eye sight. Any advice? As much as my family try to understand, I just don’t think they really can see it the way that I do.

7

@LibbyD,

You may want to ask your question in the Diabetes and Pregnancy group as well. I have mild retinopathy in my right eye and my doctor told me that during labor and delivery your eyes are more at risk if you are having a vaginal delivery because of pushing and the pressure it causes. My eye doctor put my mind at ease with my own personal situation.

The best thing to do is ask your eye doctor, endo and OB and if there are any major risks for you, because they know you and your medical history the best. Have you asked your eye doctor any questions before?

8

@ Gina

No, I haven’t had this specific conversation with my eye doctor yet. Right now I’m in the planning and preparation stages for getting pregnancy, trying to get my A1C and other things in order before getting pregnant (plan is like two or so years). My concern with my eyes is that I’ve read a number of things online (and we all know how reliable THAT information can sometimes be) saying that pregnancy in general can cause additional retinopathy, especially in diabetics who already have it.

I’ll have to talk with my doctors about my particular situation, but I appreciate the insights here too.

9

I’m looking for some support! I’ve never posted in here before, but felt the need to. My story soiunds similar to those listed above. T1 for 30 years. I don’t remember my control much as an adolescent, but I know I was relatively healthy and active in sports. Then the teen/college years were a mess. A1C’s of 10-12 for years. I battled significantly with anxiety over low blood sugars and would keep my sugars high on purpose. I finally found the help I needed and gradually began taking control back, getting A1C’s in the 8-9 range. For the past 4 years I have been in good control with A1C’s in the 7’s, and my most recent was my personal best at 6.6. I was very happy! I’ve been exercising regularly and eating low carb for the past 6 months and feel great. However, soon after my best A1C I had an eye bleed. I’ve had some background retinopathy for years, but no other complications and no noticibale signs of retinopathy related to my vision. As soon as my eye bled I knew exactly what it was. I’d been afraid of this for 30 years, and it felt like my nightmare was coming true. It is only in 1 eye and the vitreous hemorrhage cleared after about 4-5 weeks, but bled again about 2 week later (which was 2 weeks ago). I just had my first laser surgery last Friday. This second hemorrhage seems to be clearing, but I am so scared. What if it happens in my other eye and I can’t work/drive/etc? Will this keep happening? It sounds like a lot of people have to have laser multiple times and end up losing vision. I afraid of having a vitrectomy and continued laser. I’m not afraid of pain or anything, just very fearful of losing my vision and independence. What have others experienced? Any advice, knowledge, encouragement or support is appreciated. I’ve scoured the Internet but would really like to hear from some people who have had this issue.

10

Hello fellow Retinopathy Sufferers,

I’ve had Type 1 for 29 of my 30 years as of this month. I was diagnosed with severe proliferative retinopathy earlier this year in my left eye, which came on very suddenly and moved very fast. Although they’ve tried every treatment I’ve found on google, laser, vitrectomy, and anti-VEGF injections, unfortunately it seems my left eye doesn’t respond to treatment. I too am worried about driving, working, and mostly what could happen in my right eye. I know it’s possible in most states to drive with one eye and I plan to live somewhere with public transit anyway, but currently my left eye can still see some shapes and figures and my brain simply projects them onto my right eye, making the whole world seem double. My doctor claims he doesn’t know if that will get better or what to do about it…

I’m wondering if those of you that have posted before have any advice or any news on their own personal struggle with this complication, as I see many of you have asked before. I wish I had more information to provide, and if I do, I will put it here.

There is SO little information out there, even about vitrectomies themselves for those with type 1, particularly for those of us that are younger. My doctor didn’t even explain that if a gas bubble was needed there would be weeks of lying face down… I would love to find or make a support group, perhaps on Facebook, where we could discuss our issues, share our successes and disappointments, and begin to try and understand what this means going forward. Would anyone else be interested?

I’d even just like to compile a list of some common issues you’ve faced and common practices for treatment and outcomes that others who face this could read, i.e. descriptions of early symptoms, treatment experiences (laser, vitrectomies, the good and the bad, aids like chairs and bed attachments that my own doctor didn’t even know about…).

I’m going to Joslin in Boston next month for a second opinion, they’re supposed to be some of the best so I will update you with anything I learn and can share, so incredibly fortunate to have health insurance.

Thinking of you all, it’s comforting to know we aren’t alone but of course knowing what we are going through I wouldn’t wish it on anyone.

1 Like
11

Im new to this site so excuse me. Heh. Im 14, turning 15 in September. Ive had diabetes for 8 years. It was poorly controlled for a while due to my diabetes being so weird compared to most. I also suffer from retinopathy and neuropathy. Just pain from my thighs to my feet, constant tingling and burning sensations. As far as my eyes, i am blind as a bat without my glasses and tend to get pains as if mt eyes are being dug out as well as headaches. :frowning: