Vinicius Uchoa: my story with eye floaters

 

Because I was a miopic child I have always seen floaters, however, they were only web-like transparent floaters that appeared from time to time in very bright places, never at night on white walls or bright televisions. It didn’t bother me at all, and I didn’t need even a single minute to get used to it as it would appear and then fall down to the bottom of my eyes, not to be seen again for days even if I tried to look for it. In my hometown, a small village in Brazil, I used to play football with my friends, go to the beach or swimming pools, read books and simply enjoy walking outside. However, I can’t enjoy or even do any of this anymore. The floaters I have been experiencing from 13 to 18 years old are completely different.

 

Before I had any symptomatic floaters I regularly got my eyes checked by an ophthalmologist and in one consultation he told me I had high eye pressure and glaucoma. As such, I would have to use drops for the rest of my life to control the disease and not lose any part of my vision. I started the course of drops, twice a day as prescribed, and weeks passed by normally.

 

One day, when I was 13 years old, I was waiting for the bus to school when, out of nowhere, these transparent and dark floaters appeared in my vision and started following all my eye movements. At first I just thought these were the floaters I’d always seen so I didn’t give them much attention, or at least I tried not to, as I found it was simply impossible to ignore the swirling mass of shadows everywhere I looked. These were completely different from any I had experienced before, they did not go away or fall down to the bottom of my eyes like the previous ones had, they persisted and started bothering me so much I wasn’t able to endure being outside. I couldn’t go to school so I returned home, panicking out of fear of going blind. After doing a quick search on the internet about these floating things and finding out about potential issues like retinal detachment, I could only panic even more.

 

Eventually, I went for a consultation with a different doctor in another town where they performed many exams to rule out any dangerous conditions. As it turned out, I was diagnosed with PVD though, thankfully, I hadn’t lost any of my sight according to the doctor. I asked the doctor about curing my floaters, if you are a floater sufferer then you can guess what she answered. With the biggest of smiles she told me: “It’s not dangerous. I have them too, everyone has them, they’ll stay in your eyes, there is no way to remove them, just get used to it and don’t think about them, don’t search for them and you will see them less”. I imagine she must’ve thought that was a comforting thing to say to me that would calm me down and make me feel better, which it did, for a while. I believed that this would happen and these things wouldn’t interfere with my sight anymore though, weirdly, she did talk about vitrectomy as an option if too many floaters swirled my vision one day, despite saying there was no way to cure floaters. So I went back home with hopes of getting better. At the same time as this, I began seeing the blue field entoptic phenomenon (BFEP) in bright areas during the day and at night too whilst watching TV or just being in generally brighter places. I did not mention this phenomenon to any doctor and just hoped it would lessen or go away too (neither of which has happened 5 years later, it seems worse now than it was before and I see it at lower light levels, even as I write this). Another symptom I experienced was a weird “line distortion” on all lined surfaces or places with lines, that has also remained in my sight and gotten slightly worse with time, though it is mitigated well by use of my prescription glasses.

 

I tried to do what the doctor said, I tried not to think about them, and kept doing daily activities outside with them. But that didn’t work out, it was simply impossible to ignore the amount of stuff floating in my field of vision alongside the very bothersome BFEP, so I had no choice but to wear sunglasses any time I was outside. Even with this it was still very difficult to concentrate or enjoy doing the daily activities and hobbies I used to do very easily before. Since then, playing football has remained an absolute torture for me and no longer something fun and enjoyable, as I cannot concentrate in the moment and have peace in my sight for an instant due to floaters and BFEP. After so much time trying to not think about them, trying to ignore them and live with them it has become clear to me that I am one of the unlucky ones who cannot adapt to floaters no matter how hard they try. So my life was changed from then on, I had to abandon my previously beloved activities since there was no point in forcing myself to keep going through them. I stopped going out for enjoyment except to work or when absolutely necessary.

 

I began searching on the internet for cures or anything that could give me hope to get my life back, I spent months following floater cures and research pages along with facebook forums and it just became more clear to me how much our problem is underestimated and how it can lead people to despair, though I was happy to be able to talk to people who truly understand what I was going through daily, and share our experiences and thoughts on how to cope with the problem. These online sufferers and my family have helped me a lot (more than any doctor I’ve had a consultation to date with ever could) to feel better and more hopeful about my problem. Though having talked to online sufferers and seen their positive experiences in life, despite having floaters, did help make me feel better that I would be able to enjoy life again like they could, that just didn’t happen.

 

I recognize that unlike many sufferers that I see online I am unable to get used to this problem. I’ve tried so hard during the past five years to adapt and live happily again by using sunglasses, trying not to think about them, trying to accept them, trying to still do the things I love,but no matter how hard I try I just can’t feel happy or content with life the way it is now. Though I don’t want any sufferer who reads this to think that you will be unable to adapt or live and be happy with these things, it’s certainly possible for many sufferers, I hope you are able to because I know how difficult it can be and we should all try to do that because life simply doesn’t stop because of our problems. I just want you to appreciate the fact that in my personal case I just can’t do any of that even though I try my hardest every day.

 

Upon seeing how much my life had been affected, my parents decided to take me to another doctor to get a second opinion. That doctor had the same way of thinking as the previous two about floaters, he told me that they would stay and I’d have to get used to them. I tried talking about vitrectomy but he quickly dismissed it, however, in this consultation he told me my eye pressure was normal and I did not have to use drops. So I stopped using them and nothing bad happened to my vision which made me suspect that the unnecessary use of these drops may have caused my floaters as, since I stopped using them, my floaters haven’t gotten worse though they also haven’t gotten any better.  

 

I spent many weeks coping with this on a daily basis and it was especially bothersome at school as looking down to write and then back at the board brought a big dark floater up through my sight, along with the line distortion that cuts through letters. Looking at people with lined clothes and most lined surfaces in general is also very hard for me.

 

I eventually returned to this same doctor and tried talking about how affected I was by the floaters, but he dismissed it and recommended to my mother that I go to a psychologist, probably thinking I was obsessing over or consciously looking for them which is just not true. He also told me that I didn’t need to use sunglasses outside, despite my reasons and he just approached me and said into my ear that “These floaters will sink to the bottom of your eyes”. Having heard that I gave up trying to argue any further and went home. Though I kept thinking how weird it was for the doctor to give me two different answers about what would happen to my floaters. Again that counsel didn’t help as years later it has turned out not to be true and wearing sunglasses outside is still a must, rather than a choice for me.

 

After more time adapting my life to living with floaters, I have experienced both happy and sad moments. During this time, my family’s support and that of online sufferers has helped me a lot though I have never gotten back to how happy I was before floaters and, different to many other sufferers, I have not experienced any improvement with regards to any of my symptoms through being more mentally happy or positive in life. 

 

Whether I’m going through a good phase or bad phase, my floaters don’t lessen or stop being bothersome. What I see is always the same. Searching online, trying to find any hope for a cure or improvement I discovered the VDM Project and its mission on a facebook floater group. 

I watched the webinar with Dr. Sebag and finally, after so much time spent with insensitive doctors both in videos online and in consultations, I felt that I had found a doctor who truly understood my plight. I’m very grateful for Dr. Sebag’s research on floaters over the years and his consideration of it as a disease in some cases and not a simple nuisance. Seeing Dr. Sebag’s videos and his sympathy and care towards our disease has given me hope and made me more positive. So I decided to help the VDM Project in any way I could because I truly believe from my personal experience and Dr. Sebag’s research shows that what I and many others around the world have is truly a disease that deserves consideration and care like any other. 

 

I want to help this reality to change because even after my 5 years with floaters, I once again became frustrated in a recent consultation with the same doctor from years ago. In one of Dr. Sebag’s videos where he answered my question on how we can change the minds of unsympathetic doctors. He explained that we can only change the minds of those who are open to change and that by taking one of his publications on floaters and their significance as a problem to these doctors, it could help to change their minds. 

 

I chose to go back to that doctor because, since she had at least mentioned vitrectomy, I thought that maybe, just maybe, she would be open minded about learning a new perspective on the problem. But I was wrong, she dismissed my problem telling me that “If anyone keeps looking for them they’ll always see them”. She also told me vitrectomy could remove the floaters but it’s not worth it since it could “leave me in darkness” for something that according to her I just need to stop looking for. There was also a young man, who seemed to be a medical student, helping her perform exams on my eyes and he felt the same as her. He told me he has PVD too and a lot of floaters which is very weird to hear as I can’t stand being outside without sunglasses and he came to the clinic without sunglasses and did not appear to be bothered at all. This experience made me more unhappy as this out of date approach is still being taught to the next generation of doctors. Maybe most people including these doctors experience floaters similar to what I had when I was a child, and that’s why they’re not bothered by them. Anyway, she told me that I did have glaucoma along with dry eyes and I’ll have to use drops 6 times a day for both conditions. I only hoped that none of those drops would worsen my eye floaters because doctors just don’t seem to care about them, whether they are the ones I had as a child that didn’t bother me, or the life disrupting ones I have now.

 

Having to live with floaters, BFEP and the line distortion mentioned earlier has had a big negative impact in my life. Although I’d love to get rid of all three conditions, I can say I’d be extremely happy and satisfied to get rid of just the floaters as long as the other two don’t get any worse. I don’t have many tips for anyone else other than the use of sunglasses, as most of what seems to work for other sufferers doesn’t work for me. Atropine (I went to this consultation and used it but it did not make floaters less noticeable), ignoring, having a more positive mindset or not looking for them don’t seem to benefit me. 

 

But I encourage sufferers to join floaters groups and see other sufferers’ tips because they may work for you. Everyone’s case is different, so don’t lose hope that you may be able to live with floaters or ignore them. Try out other people’s advice but be careful with unproven methods. Let’s live with it for now but do what we can to help Dr. Sebag and the VDM Project to raise more awareness and stimulate research, because things will not change if we don’t do something together.