A little background on me…
I’m a Type 1 Diabetic. I was diagnosed with it when I was 10, back when they called it Juvenile Diabetes because it primarily happened in childhood. Now it’s just called Type 1 or T1D. I’ve been T1D for forty-five years now. I’ve been on an Insulin pump for the last 20 years and started a Continuous Glucose Monitor in the past year.
I’ve always been followed by an Endocrinologist for my Diabetes and the usual Dr.’s and Specialists that come with it. About 10 years ago in 2005, I was at my Opthomologist for my regular annual visit and he said he saw something of concern in my eyes. Alarmed, I asked what he saw and he explained he thought he was seeing the beginnings of Diabetic Retinopathy and wanted me to start seeing a specialized Opthamologist. At that time, there was no one in that specialty in our Valley and he referred me to a colleague down in the next valley below us. I made an appointment right away and for the next 10 years I was followed by the new specialist as he monitored my Retinopathy.
As a T1D we are at risk for microvascular complications. The blood vessels in the eye are part of that and Retinopathy meant when the tiny vessels in my eye became blocked, my eye would generate new vessels to carry blood through the eye. Unfortunately these new vessels are fragile and break easily. Then the eye makes new vessels to replace those. This process is known as reinopathy. My opthamologist I was now seeing in the valley began monitoring me every four months and tracked the new vessel formation. When the vessels affected my vision he would zap them with a laser to stop the growth and hopefully prevent them from continuing.
Fast forward to six months ago, a cataract in my right eye had reached the point that it was hard to drive – I couldn’t see freeway offramp signs clearly and night driving was becoming a glare of headlights. My opthamologist referred me to his associate to assess it. I was told a tiny risk of having a cataract removed was that the affected eye could have other problems down the road. I didn’t really feel like I had a choice. My driving/distance vision was interfering with my work since I had to drive long distances. I had the surgery in December of 2015.
About a month following the surgery I noticed I had a flash in my peripheral vision. Alarmed, I called the surgeon and he had me come in the following day. After doing a thorough exam he explained that vitreous gel in my eye was tugging on the retina. Since the eye doesn’t really see but instead sends the images you see to your brain to be read – each tug sent a message down the optic nerve to my brain which is in turn, was “seen” as a flash in my vision.
There was no danger at the moment. He said the vitreous shrinks as we get older. Yuck – I’m only in my fifties, I thought to myself. Anyway , as it shrinks it pulls away from the retina lying on the back wall of your eye. Usually it pulls away cleanly and people don’t really notice it. But in some people (like me) it pulls in some places and each pull causes a flash in the vision. But just to be sure, he referred me back to my Opthamologist in the same practice who was already monitoring my retinopathy. Another thing to monitor I thought. My regular opthamologist saw me the following day and concluded the same thing. Come back in three weeks he told me, so we can keep a close eye on things. Great.
I went back regularly for the next few months. I had to. The flashing lights drove me crazy. About once every hour in my right peripheral vision it would be like a car was passing me. Soft white light approaching, it would go across my vision and then be gone. Unnerving to say the least. Yes, I knew what it was – retinal tugging -but now I could also Gooogle the hell out of it. Bad thing to do. I learned so much but also scared the pants off myself. Basically I learned that the vitreous would tug on the retina as it shrunk, causing the flashes of light. The flashes could go on as long as their was vitreous attached. Some sights said six months to a year. I asked my opthamologist about it but he was pretty noncommittal. I realize that’s because each patient is different but a timeline would have been helpful. My doctor was doing watchful waiting as he called it but for me, it was just driving me crazy.
With these types of eye things I realize you are kind of on your own. The Doctors can only tell you so much because they can’t really predict what’s going to happen to each and every eye they examine. They can give you guidelines but that’s about all. Finally about three months into the watchful waiting, I had had enough. The flashes of light had not slowed down. They still came regularly about every hour or so. Each time I’d wonder, is this the last one. In the back of my mind was what I’d learned Googling, that the tugging could cause a hole or tear in the retina. Spots, floaters, a veil or curtain across your vision – that would be my only sign that the retina had a tear and that would be an eye emergency.
So in April, I came to realize I needed more answers. After another frustrating appointment where my Doctor did a thorough eye exam and then studied all the latest images of my eye, he said everything was quiet. I wanted to explode. I’m having flashes every hour I reminded him. I’m worried that this will will tear when I’m away from home, at work or even on a trip. How long will this go on? No answers. I mentioned things I had learned from my internet searches. A vitrecttomy, retinal repair. Oh you don’t want to have those he told me. No, I certainly didn’t but this watchful waiting was taking it’s toll. At least I wanted a guideline of what he was looking for and what his plan was to address it. I was so frustrated. He had been following me for 10 years and now I felt like he didn’t know or want to let me know what the plan was. This was my vision we were talking about!
I came home that day and developed a new plan. I was already part of UCLA for my diabetes care. I was being followed by an Endocrinologist through their Diabetes program and I was pretty happy. Dr. Ahn was following my pump therapy and had convinced me to start Continuous Glucose Monitoring to bring my A1C into tighter control. We were doing that and I could see the results in my numbers. It made sense if UCLA was able to do this for my diabetes that they must have something they could do for eyes as well. I went online and learned that they did. They had something called the Jules Stein Eye Institute. I called them that very day. After running my insurance I was told I could make an appointment. As luck would have it, they had an opening in two weeks with one of their opthomologists. I had just seen my Dr., so this new appt. would coincide with what would have been my next follow up. I actually felt relieved. Someone had once told me years ago, that to get the best care for my diabetes I must go to the Big House. When I looked puzzled, he explained that the Big House is any hospital affiliated with a teaching institution. It would be the place where clinical trials and new research was being conducted. Doctors there would be at the cutting edge of treatment and patients could benefit from knowing that they were getting the latest care. In LA, UCLA would certainly qualify as a Big House. I chose them for my Diabetes Care. Now it made sense to choose them for my eye care.