All About Retinopathy

I’m thinking it’s probably best to give you the low-down on my retinopathy early on, since it will likely come into play in later posts and this will give me/you something to refer back to.  This is a long one.  My experiences are kind of interspersed between “retinopathy lessons” so go ahead and pick and choose what you want to read!

I’m going to start by posting an article that I wrote for a local diabetes newsletter a few years ago as it explains the first half of my retinopathy story pretty well.  Here it is:

 

On July 8, 2007, I got some not-so-great news from my ophthalmologist.  He saw evidence of proliferative diabetic retinopathy.  I’ve had Type 1 diabetes for 25 years now, so I’ve always known this would be a possibility, but it was still pretty hard to find out it had actually happened.  At 28 years old, I feel too young for this.   

For those of you unfamiliar with retinopathy, and as a refresher for those of you who are familiar with it, here’s a quick explanation of the stages of retinopathy [thanks to the Mayo Clinic Website who has since changed the site, so I can’t link to it here anymore…sorry]:

  1. Non-proliferative Retinopathy.  At this stage, microaneurysms occur. They are small areas of balloon-like swelling in the retina’s tiny blood vessels.  As the disease progresses, blood vessels are blocked, depriving several areas of the retina with their blood supply. These areas of the retina send signals to the body to grow new blood vessels for nourishment.
  2. Proliferative Retinopathy.  At this advanced stage, the signals sent by the retina for nourishment trigger the growth of new blood vessels. This condition is called proliferative retinopathy. These new blood vessels are abnormal and fragile. They grow along the retina and along the surface of the clear, vitreous gel that fills the inside of the eye. By themselves, these blood vessels do not cause symptoms or vision loss. However, they have thin, fragile walls. If they leak blood, severe vision loss and even blindness can result.

I’ve been seeing my ophthalmologist annually for as long as I can remember, and I’ve known for a while that I had non-proliferative retinopathy.  About a year ago I developed a tiny blurry spot in one eye.  My ophthalmologist suggested that it may have had something to do with the early stages of retinopathy, but didn’t suggest treatment at the time – he just wanted to keep an eye on it (no pun intended).  Then, a few months ago, I noticed another blurry spot; only this one was larger.  I went to see my ophthalmologist and that’s when he gave me that not-so-great news.  

Laser surgery is often used to treat non-proliferative retinopathy and seal up the leaky blood vessels to allow more oxygen to get to the retina.  Laser surgery is almost always used with proliferative retinopathy in order to make the abnormal new blood vessels shrink and disappear.  It requires 1000 or more laser burns per retina.  (Note that this is a completely different procedure from the “Lasik Eye Surgery” that some people get when they don’t want to wear glasses or contacts anymore.)  I was told that the laser treatments themselves might reduce my night vision, make my eyes more sensitive to glare, and also affect my peripheral vision to a small extent.  It’s scary and sad to hear that you may have to sacrifice some of your vision to save the rest of your vision.

I had an appointment on July 4th to go for a fluorescein angiography.  During this procedure, dye was injected into a vein in my arm, and then pictures were taken of my retinas.  This allowed the ophthalmologist to get a better look and determine exactly where the laser treatment needed to occur.  That same day he started the laser treatments in my left eye. 

 My pupil was dilated, and then he put numbing drops in my eye and the also some numbing gel.  Then he put a lens up against my eye.  He shone a really bright light in to let him see (just like in a normal dilated-pupil eye exam), and then really quick pulses of very bright light. I had taken some painkillers ahead of time, and it didn’t hurt at all.  I just had a bit of a dull ache when he was done. That said, it was still very “intense” and stressful.  I made it to about 130 zaps before I got woozy (this happens to me easily) and needed to stop. 

The next two visits for me (over the next two weeks) were frustrating and discouraging.  I anticipated being able to progress a lot faster, but I wasn’t able to make it past 150 zaps without getting woozy and needing to stop.  It didn’t help that I did have more pain during the third treatment.  Then finally during the fourth treatment something clicked for me and I was able to sit for 380 zaps.  It was such a boost to my confidence!  I expect to be able to finish my left eye in one more treatment, and then get through my right eye in three or four treatments.  It will be so good to be finished!

So far I haven’t noticed decreased peripheral vision, nor decreased night vision per se.  What I have noticed is that my left eye takes a bit longer to adjust to going from light to dark or vice versa.  It does adjust, but it takes a few seconds.  Also, a temporary effect (for a few days after treatment) is that I sometimes see flashing lights when I close my eyes.  That will not be permanent, though.
 
The whole experience has been quite emotional for me.  Obviously there was the anxiety and fear related to the actual procedure, but it went a lot deeper than that for me. 
I have felt very discouraged and very sad about this new stage in my diabetic life.  I’ve also recently learned that pregnancy would be very hard on my eyes, and that, if I want to protect my vision, I should wait for confirmation that the laser treatment is working and my eyes are doing better before my husband and I start a family.  It has all been very hard for me to accept, especially since my control has improved drastically over the last 9 months or so.  Even though I know I shouldn’t be too surprised after 25 years with this disease, it’s still pretty hard to take.  It’s a serious diabetes complication, and I don’t want to be someone with a serious diabetes complication. 

Two things that I have been reminding myself (and my family and friends) are: 

  1. Diabetic retinopathy has some connection to diabetes control, but it’s not necessarily 100% avoidable.  Just because I have it doesn’t mean I’ve been a “bad diabetic”.  I’ve spent most of my life doing the best I could to take care of myself.  Some people are just more predisposed to getting it than others.
  2. This does not mean I’m on my way to going blind.  Many years ago, I might have been, but technology has advanced to such a degree that laser treatments can go a long way towards preventing blindness due to diabetic retinopathy.  There’s a definite chance that this is the last I’ll have to deal with it.  It’s not a guarantee, but there’s a good chance.  Of course, this also comes with a commitment to tight control over my diabetes for the rest of my life, but I know it’s worth it.

So if you or someone you know is facing diabetic retinopathy and/or the possibility of laser treatments, please know that it’s okay to be scared and it’s okay to be discouraged.  I had to take time to grieve, and I’m still not quite done with that process. But also remember that the treatments themselves aren’t that bad.  They take some getting used to, but they’re really very manageable – and if I can say that, then any of you can say that too.  And remember that this isn’t a death sentence for your eyes.  The technology in this area is amazing and it can truly save your sight.

On the other hand, if you are a diabetic who is lucky enough not to have had to deal with diabetic retinopathy, please please take care of your diabetes.  And see your ophthalmologist annually.  My blurry spot was an indicator for me that something was wrong, but retinopathy often comes with no immediate symptoms.  Even though there is treatment for retinopathy, laser surgery is not a cure for it.  There are still risks, and your eyes are not something to gamble with – not to mention your kidneys, your feet, etc.

 

For those of you who are interested, here’s a little “quick and dirty” on retinopathy treatments.  Keep in mind that I’m not an expert – this is just my best explanation of how I’ve learned to understand it!  Particularly, I don’t have much knowledge of #1 below, so if there’s anyone out there who sees something needing correcting, please let me know!

  1. Laser treatments to treat background bleeds in non-proliferative retinopathy.  (I believe these are called focal laser treatments.)  I have never had these, but as I understand they are to stop or slow the bleeding.  You would think (as I initially thought) that they could do this type of treatment on bleeding related to proliferative retinopathy (i.e. the type I have) as well, but it appears not – I’d guess because the leaky blood vessels are so small and flimsy. 
  2. Pan-retinal photocoagulation laser treatments for proliferative retinopathy.  This is the type of treatments I have had.  This is also sometimes referred to as scatter laser treatment.
  3. Avastin injections (i.e. steroid injections).  Supposedly these can help the bleeding stop, but it involves a big needle in the eye.  (It also isn’t recommended while breastfeeding.  My doctor wants to avoid this for now.)
  4. A vitrectomy.  This involves going into the eye with a sort of vacuum needle and sucking the blood out of the vitreous.  It’s not pretty, and it requires lots of “happy drugs” (the technical name, I’m sure) to manage the procedure.  My doctor and I would prefer to avoid this treatment unless there is too much of a mess in my eye and it starts to interfere with reading, driving, etc.  So far it’s not nearly at that point.

Since writing the above article, I finished all the laser treatments required at that stage and then had no more problems until the 3rd trimester of my pregnancy.  At that point I started to experience more neo-vascularization (i.e. growth of new weak blood vessels) in my left eye and got more laser treatments for that.  In total by now I’ve probably had about 2000-2500 zaps in my left eye and about 1000-1500 in my right.  Then on the day my daughter was born I had my first major retinal haemorrhage.  My left retina has bled off and on since then (meaning I currently look through a blurry, spotty mess in my left eye), but my right eye has been stable the whole time (knock on wood).  My ophthalmologist has been holding off on treatment because treatment for the current problem (i.e. a vitrectomy) is very invasive and not really necessary at this point.  When (if?) it stops bleeding, it should clear up eventually on its own and there shouldn’t be permanent damage.

At my last ophthalmologist appointment there was no new growth of blood vessels (yay!),and no signs of scarring or retinal detachment or anything like that (yay!).  So far everything I’ve experienced is still considered “temporary” and my doctor isn’t worried, so that’s good!  He says we’re not even ruling out the chance of future pregnancies so that’s also good!  He’s a great doctor, and I trust him immeasurably.  I’m lucky to be in his care.  It definitely is frustrating, though, to be dealing with this vision issue all the time.  After a bleed you do eventually get used to seeing through the mess (but it’s harder in the bright sunshine), but every time it bleeds again you get kicked down a notch again.  It really starts to wear away at my patience and my optimism.  I’m definitely ready to be done with it!

Anyway, there’s the background on my retinopathy – and on retinopathy in general!  I’m really hoping to connect with others of you who are experiencing retinopathy as well – so give me a shout!

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23 responses to this post.

  1. Posted by laura on October 16, 2010 at 2:42 pm

    Dear Bethany,
    I just read your article you wrote about your proliferactive retinopathy. I was just diagnoised with this lat week. I have diabetes as well, for the past 20 years. I’ve had 2 beautiful children and no problems with them during either pregnancy. I notcied blurred vision in my right eye last week, and ran to the doc the following day, which she said she seen blood behind one eye. She sent me to a retina specialist that dialete the eyes, took pics and said I have proliferactive retinopathy, which i need the laser surgery. My question to you, if you can help me out here is how long with my vision remain blurry for? how long does it take for the blood to dry up? When i have the laser done, will it take a long time for the blurryness to start going away? thanks for answering my question. I am going for my first laser treatment this week.

    Reply

    • Hi Laura! I’m sorry to hear about the development in your eye. Unfortunately I don’t have an easy straightforward answer for you. How long it takes for your vision to return to normal really depends on your specific situation. I know some people have retinal bleeds that clear up quite quickly. My most significant bleed was almost 17 months ago and the blood from that still isn’t all gone. But I’ve also had smaller bleeds in the meantime – some of which have added to the mess that’s already there and some of which bleed in the morning and are “gone” by lunchtime.

      If you’re having pan-retinal laser treatments for the proliferative retinopathy, your ophtho will be treating the cause, not the symptom. In other words, he won’t be “cleaning up” your bleed, he’ll be trying to prevent future bleeds.

      It’s also possible that the blurriness is caused by swelling (edema)…something I haven’t experienced and don’t know much about. Keep in mind, too, that the laser treatments may cause changes to your vision as well.

      I am not an expert on this – I can only tell you my own experience. I highly recommend that you ask your ophtho these questions as well. In the meantime, feel free to ask me anything else, either through these comments or via email (mewithd “at” gmail “dot” com).

      Take care and good luck!

      Reply

    • Posted by John on October 17, 2010 at 12:52 pm

      Hey,

      Blurry vision is the result of bleeding or leakage. If it’s within the retina, the leakage swells and is called edema. Where you were diagnosed with proliferative, I’m guessing you had a little bleed, not edema. You’ll have to verify with your doctor. You’ll see him or her soon if you are getting laser.

      I had edema once. After lasering it, the blurriness was gone within days. I’ve had several bleeders. They can last three months or more.

      Understand the laser will damage your vision some. These pan-retinal blasts do kill peripheral tissue. Your central vision should remain intact, but your periphery will become impaired. Most cases result in annoying vision rather than a handicap. I always know my sight is off, but there’s very little I cannot do anymore. How much and the exact difficulties you will experience vary. Some are not able to drive at night, reading will be a little harder, some sports will be very tough. I have a very difficult time catching baseballs, but I have no issues playing hockey.

      The bigest thing you need to worry about is your BG control and diet. I now run sub-6 A1Cs and I eat a very low carbohydrate diet. I believe both are essential; though doctors mostly won’t agree with me. I am even more restrictive with fructose, lactose, and gluten.

      Reply

      • Thanks for the input, John!

        Laura, I also had the permanent effects of laser treatment that John is talking about – the decreased night vision and decreased periphery in particular – but no aspect of that bothers me on a regular basis. I can still do everything I used to be able to – including driving at night. You may notice the impact at first and then you may get so used to it that you barely notice it at all anymore – or maybe not at all! It will depend a lot on how many laser “zaps” you need and where they are.

        I hope your doctor is able to clear up more of these questions for you. All the best! Let me know how it goes!

  2. Posted by Marilyn gerhardt on October 21, 2010 at 5:08 pm

    Hi!,

    My name is Marilyn. About two months ago I was diagnoised with Diabetic Retionpathy.
    I have had to shots in my eyes. the drug called Avastin. I have also had one treatment
    in my left and tomorrow will have another laser treatment in the same eye. I also
    have to have two treatment in the right eye. My doctor says my night vision and will be
    affected.
    It was hard at first being told this but I know that my eyes are so important I will do
    anything to save them.
    I hope all is well with you!!!

    Reply

  3. Posted by Michelle Simpson on January 17, 2011 at 2:46 pm

    Hi Laura, can I just say it was interesting to read your article about what you have been through with your eyes and diabetes. I have had type 1 diabetes for 21 years and had my first pregnany last year. Prior to my pregnancy I must admit i was lacksadaisy about my blood sugars, but because i was planning a baby I began to rectify my blood sugar levels. During my pregnancy I was told some bad news about my eyes too and was told I had diabetic retinopothy. I needed laser eye surgery straight away on both eyes. After numerous laser treatments my eyes had still not improved. I was told to wait until my pregnancy and they would possibly have to carry out a vitrectomy on my left eye. I had a cesarian section due to my eye troubles. In Sep 2010 I had a vitrectomy and now experiencing blurred vision in my right eye and black dots and black lines. Every second of the day I worry myself sick constantly worrying about my eyes and if I might go blind. Its such a shame because during my whole pregnancy I was worried sick about my eyes and my blood sugars and now my whole life is taken over with worry. I have a 6 month old baby and find it so difficult to manage/cope with testing my bms every hour and worry about my eyes. I also feel it has changed me as a person and can not fully relax and enjoy myself. Im sad to hear what you have been through, but feel relieved to listen to someonelses story and know there is someone out there who has an understanding of how I am feeling. Thank you very much for your article.
    Michelle

    Reply

    • Thanks for your comment, Michelle. I totally understand the worry you are going through. It’s difficult living with retinopathy and diabetes – you can never fully put either of them on the back-burner, so to speak. As time goes on, I’ve found it has gotten easier to relax and enjoy myself, though. While it’s easier said than done, I really try not to let either diabetes or retinopathy take over my enjoyment of life. I hope you’re able to find some peace even with the difficulties you are having.

      Sorry it took so long for me to respond to you and post your comment. We’ve been having computer problems.

      PS – My name is Bethany, not Laura. 🙂

      Reply

  4. Posted by Liz Murphy on March 31, 2011 at 1:47 pm

    Hi. I can’t tell you how much I appreciate your blog. I have had two laser sessions without novocaine and made it to about 400 zaps. I now have a new Dr due to moving and he wants to use the novocaine shot so we can finish 1000 in one session. I’m concerned about this shift in practice. I also should mention that my former Dr is from one of the best clinics in the US and my new Dr is less experienced and younger. Have you ever had the shot? Any thoughts on it? I’m pretty terrified and it is tomorrow. I am more concerned about the difference in practice than the actual shot. Any thoughts would be great. Thanks.

    Reply

    • Hi Liz…so sorry not to get back to you sooner!

      I’ve never used novocaine as the thought of having a needle in or around my eye was always more terrifying than the laser zaps themselves. My treatments have always involved numbing drops and numbing gel, but those have only affected the surface of the eye (i.e. to numb the place that the lens is touching).

      For me it’s been the right decision, because my “discomfort” in the midst of the laser treatments has rarely been a result of significant pain. It’s miserable – true – but I’ve usually found it more “stressful” and “uncomfortable” than “painful” (and I’ve heard the same from various others who have had these treatments). In my experience, the pain has varied depending on where exactly the ophtho is zapping. Certain places haven’t hurt much at all, and others have, but not to a point that I haven’t been able to handle it. If you are having significant pain with your treatments, and you think that the novocaine would help, it might be worth a try.

      I’m not sure I can comment on the difference in practice…sorry. I don’t know what to tell you about that except that it doesn’t sound “fishy” or anything from the experiences I’ve heard from others. I know that 1000 zaps in one session is a pretty normal amount and that some patients are given a shot to help them deal with the pain, but beyond that I’d hesitate to comment.

      I hope you’re able to get this before your appointment! Again, sorry for the delay in responding.

      Reply

  5. Posted by Cindy on July 26, 2011 at 5:53 am

    Hi Bethany,

    My 25 year old son has had type 1 since he was seven. He lives in the UK at the moment and went to the eye doctor who said something about seeing something but not treatment is required at this time. Of course he is concerned and as a mother I am worried but your blog has eased my mind. I was really hoping that a cure would have been found for type 1 many years ago as I know you, my son and all who have diabetes have such a hard time. It’s such a balancing act. Anyway….I hope you are doing well and thanks again.
    Cindy

    Reply

  6. Posted by Peggy on September 13, 2011 at 9:10 am

    Hello,
    I am scheduled for this treatment in three days and finally got the nerve to research the pain involved. I guess I am a woosie. Thank you so much for your detailed account. I feel more calm about the whole thing, although I’m still a little anxious.
    Peggy

    Reply

  7. Posted by Cindy on September 13, 2011 at 10:40 am

    All the best Peggy.

    Reply

  8. Posted by craig on February 25, 2012 at 12:34 am

    last time i did prp i had to stop because it hurt so much. what painkillers did you take that helped? any advice gratefully accepted. craig

    Reply

    • I have found that some areas of the eye are more painful than others. Sometimes it’s more of a “general discomfort” feeling, and other times it’s been very painful. Thankfully most times it has been more on the side of discomfort than pain. I’ve usually only used Tylenol (extra strength). They took the edge off, but that was about all. The pain usually only lasted for a couple of hours afterwards. Sorry I can’t be of more help!

      Reply

  9. Posted by Erienne on August 15, 2012 at 11:01 am

    Hi!
    I have had type 1 for 19 years. I started have symptoms of retinopothy a couple years ago. I have had several treatments with laser and then swelling was starting to look better until march of this year. I started having floaters due to the bleeding. This has affected both of my eyes. I have been off work for about 6 months due to this. I had surgery on my left eye to remove the blood. The recovery time was supposed to be 4-6 weeks but 4 weeks in I woke up with blood fogging my vision again. Very frustrating and I have been waiting about 5 weeks to see if it will clear up on its own but it looks like I will have to have surgery again 😦
    I 29 and really want to have kids but just don’t know if it’s a good idea since I am already having problems with my eyes. I have my a1c down to 7.0 but still hesitant.
    Any advice or words of support would be so much appreciated!
    Erienne

    Reply

    • Hi Erienne. Unfortunately I can’t give you any advice – I can only tell you about my own experiences. I haven’t actually dealt with swelling or vitrectomies (I assume this is the type of surgery you had?), but I have had a lot of bleeding and floaters. For me, they have always cleared up on their own, but some quicker than others. I know folks who have had significant bleeds and vitrectomies who now have little to no trouble with their retinopathy, so there’s definitely hope! Obviously control of your diabetes is a huge factor! I had both of my daughters when I had retinopathy, but I only got pregnant when ALL of my doctors (i.e. endocrinologist, ophthalmologist and obstetrician) were in agreement that it was safe to do so. My suggestion to you is to talk to all of your doctors – ophthalmologist included – about the risks to you of having a baby. Then it’s really up to you to weigh the risks against the rewards of having a child (GREAT rewards!). It’s a tough decision, that’s for sure. You can read my posts from the time we were trying to make the same decision if it helps to give you an idea of the thought process. Good luck to you!

      Reply

  10. Posted by KAren BAtes on September 15, 2012 at 1:46 am

    I had lazer surgery for retinopathy in June. They did give me an injection
    to keep my eye from moving during the treatment. Now I have double vision and my eyeball will no longer move upward, only side to side. Now am facing what sound like barbaric tests and possible eye muscle surgery which is scary. Have you ever heard of this? Did the doctor do something wrong? Would love a reply.
    Thanks, KAren

    Reply

    • Hi Karen. I’m terribly sorry to hear about your troubles! I’ve really never heard of that before and have no idea how it may or may not relate to the laser surgery. I hope you’re able to find a way to repair the damage. All the best to you!

      Reply

  11. Been diabetic 50 years. Had 2 kids lost 1 to diabetes 2 years ago. Just had pan surgery yesterday for 1st time didn’t know I had the option of telling him to stop. Hedoesn’t talk at all. I felt like passing out after he finished. No novocain either good luck to all of you. Still no heart attacks, kidne failure or amputations. My a1c is 5.8 hope something I said helps someone out there

    Reply

  12. Posted by hans joachim michel graebner on October 29, 2012 at 9:03 am

    my eye is bleeding…had laser surgery several times on my retina but my diabetes is doing a number on me…because of the bleeding my ophthalmologist is making me wait until the bleeding stop so he can perform laser surgery…how long does bleeding in that area usually go on

    michel

    Reply

    • Hi Michel. I’m sorry to hear about your troubles with your eye. Unfortunately, I can’t really answer your question about the length of time your eye might bleed. It could stop anytime and it could go on for a while. That’s the frustrating part about retinopathy – you just never know. 😦

      In my own experience, I’ll typically have a more significant bleed last a few hours, but then minor leaking can continue for days or even weeks. Then other times it’ll just bleed once one day and not again for months. It really varies.

      Take care

      Reply

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