Posts Tagged ‘laser’

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!

Introduction

My name is Bethany Rose.  This blog is about me and my life with Type 1 Diabetes (aka “D”).  Since my life doesn’t revolve around diabetes, sometimes the posts will be more about the “Me” than the “D”, but since this is a diabetes blog, after all, you’ll see plenty of D-related content.  It’s Me….With D! 

I’m 31 years old and I have had diabetes since I was three years old.  I like to think of myself as a bit of a “diabetes veteran”, but I’ve come in contact with a number of people over the years who deserve that title far more than I do.  My journey with diabetes started in the era of 2-minute bloodtests with one shot per day of insulin (injected with a syringe) and doctors advising my parents to keep my bloodsugar around 10 mmol/l (180 mg/dl).  Now, 28 years later I have a 5-second meter, an insulin pump, a continuous glucose monitoring system (CGMS), a baby, and proliferative retinopathy.  

For the first many years of my life I was not a well-controlled diabetic.  This was partially due to the above-noted doctors’ orders, as well as the limitations of the types of insulin available at that time.  It wasn’t for lack of trying, but for years I dealt with diabetes management problems that were beginning to seem unsolvable.  As a result, my A1Cs were generally hanging out in the 8s, 9s, and 10s (and sometimes higher) for almost 25 years.  I had a number of people recommend insulin pump therapy to me, but I was completely scared of the idea of having something under my skin and attached to me all the time.  Then in 2005 I got married and in 2007 I started to develop proliferative retinopathy, and suddenly not only did I not feel as “untouchable” in terms of complications, but I also started to realize that it wasn’t just about me anymore.  I had to get my diabetes under control for the sake of not only myself, but also for my husband and future children! 

So in late 2007 I went bionic….I got a pump!  Since then I’ve been pumping with the Minimed Paradigm 522 and have no intentions of ever going back to multiple daily injections!  Sure there are frustrations with the pump, but it has allowed me to turn my diabetes management around completely!  I got my A1C down into the 7s and then even into the 6s!  This was something I never would have thought I could do pre-pump!  I am definitely loving my pump!  (Yay pump!)  In early 2008 I also started on the CGMS and saw even more improvements in my diabetes care as a result!

Just prior to starting on the pump I had laser treatments for my retinopathy.  It was an unpleasant experience both physically and emotionally, but the treatments did meet their intended goal and my retinopathy stabilized.  (I’m going to gloss over this a bit here and deal with it more in a subsequent post.)

With both my diabetes and my retinopathy under control, in late 2008 my husband and I decided that we wanted to start a family, and both my endocrinologist and my ophthalmologist gave us the go-ahead!  After a very brief period of trying to conceive, I was pregnant!  The whole diabetes-and-pregnancy experience was something else!  It was challenging and frightening and amazing all at once.  In fact, this topic really deserves its own blog….so here it is: Life as a Pregnant Diabetic

The long and short of it is that I ended up developing pre-eclampsia late in the pregnancy and I also had more developments with my retinopathy, more laser treatments, a haemorrhage in my left eye, and an early (36 weeks) c-section.  This all happened in spite of my excellent control throughout the pregnancy.  Also, in spite of my excellent control, because my daughter was early and an IDM (“infant of a diabetic mother”), she had a bit of trouble with feeding and breathing (two very important life-sustaining skills) at the very beginning (her lungs weren’t quite fully developed) and she had to stay in the Intermediate Care Nursery at the hospital for the first three weeks of her life. 

Thankfully it all turned out well – my daughter is now almost 10 months old and she is perfect!  She is a healthy happy baby with no lasting effects from her difficult start in this world.  I, too, am happy and healthy, but I do still have some occasional bleeding in my left eye in spite of the fact that there have been no new developments in that eye since the pregnancy.  It’s frustrating, but every time it bleeds it does clear up on its own, so I’m still holding out hope that one day soon it will stop being such a leaky faucet and I’ll be able to see clearly out of both eyes again!  Regardless, everything I went through with the pregnancy was totally worth it to end up with my daughter!  Definitely no regrets!

So that brings us to the present.  Obviously diabetes has made itself pretty comfortable in my life, but I think I do a pretty good job of not letting it become my whole life.  My goal is always to control it instead of letting it control me.  Admittedly that’s easier said than done some days.  This whole process is still a journey…and I’m really looking forward to blogging about it!  I’m hoping that some of my experiences can help others in the same way that some of my favourite bloggers have helped me, but also that some of you can share your stories with me and become part of my journey!  

Please do feel free to contact me through comments or via email (mewithd <at> gmail <dot> com)!  I’d love to hear from you!