Hi Reddit! My name is Rozina Issani and I lost my eyesight when I was much younger due to an inherited retinal disease called Retinitis Pigmentosa. I lived completely blind for decades, until last year, when I became one of only a handful of Canadian patients to have a microchip device, called the Argus II, surgically implanted into the retina of one of my eyes, as part of a medical trial.

This technology, commonly referred to as the 'bionic eye', has helped me regain some vision, so I thought I'd share my unique experience with the IAmA community.

Proof: http://imgur.com/002dP5z

Video about me made by the University Health Network in Toronto: https://youtu.be/QUqa15y6LHo

Note: I'm here today with Dr. Mary Sunderland, Director of Research & Education at the Foundation Fighting Blindness Canada. She's going to help me out with any questions about the surgery/technology that gets too science-y. I'll make note when she chimes in.

So let's get started! Ask Me Anything!

EDIT: Thanks everyone for your questions today! I'm signing off now, but please feel free to keep asking, and I will check back in soon to answer you. Until then, you can read a little more about my story here: http://ffb.ca/featured-stories/the-road-to-treatments/

EDIT 2: Wow! Can't believe what's happened overnight. So many questions coming in! Give me some time to go through them and I'll answer as many as I can as soon as I can. Thanks so much everyone!

EDIT 3: Hey Reddit, I'm having my friend Dr. Mary Sunderland (mentioned in my original post) weigh in on some of the more tech-y and science questions for you now. She'll ID herself in each answer she helps out with

Comments: 563 • Responses: 14  • Date: 

Ribbonz3523 karma

How much can you see precisely? Individual faces or just general shapes?

Rozina_Issani1477 karma

I can see shapes mostly, but I can also see faces, without much detail of course. I can see headlights of cars at night, the white lines when I'm crossing the road. I actually saw the big full moon the other day. I can also now see the subway doors opening and closing so that's a big help. And once I'm on the train I can see empty seats so I don't sit on anyone anymore haha.

Ale_Hodjason206 karma

How was adapting to your eyesight like? Did you have any headaches or any other troubles on the way? Also forgive me if it's personal, but who's paying for the expenses?

Rozina_Issani382 karma

  1. Once you have the device implanted and have had three to four weeks of recuperating from the surgery, you're given some training and then sent home with some rehabilitation exercises. These exercises involved a lot of visual matching of shapes; matching circle to circle, square to square, etc. Also, at night there is an exercise where someone will shine a flashlight and I have to point out the direction of where I see the light land. I've actually found the adapation, overall, to be pretty easy so far, because I dedicate a couple of hours every day to practice. It does require a lot of patience though, because you're really going back to basics (like childhood when you're learning shapes, etc).

  2. I have no headaches, and I cannot feel the microchip in my eye or anything. The procedure did result in some raised pressure in my eye, but I cannot feel it, and it's under control now. So nothing major :)

  3. I'm one of a handful of people involved in a observational trial of this technology; the first in Canada. This trial is funded by The Foundation Fighting Blindness (Canada), the University Health Network in Toronto, and Toronto General and Western Hospital Foundation, to learn more about how effective this technology is. (Mary: As a rule, you should not pay to participate in a clinical trial).

Oxmantor194 karma

Hi There. Thanks for doing this! This may be a really hard question to answer but what was it like to open your eyes for the first time? Did it hurt? Was it close to what you imagined it might be like?

Rozina_Issani508 karma

When I turned on the device for the first time I was very surprised because it was not how I'd anticipated I would see. Before the device, I couldn't imagine what 'artificial sight' would entail. I had expected it would be more like the sight a sighted person has; like the ability to see fine details and colours. Once I turned on the bionic eye device, I discovered that it wasn't as profound as maybe I had envisioned, but the differences it did make still blew me away! After 30 years with no vision at all, I could actually see the lights in my office, and the shape of people around me. I felt like an excited child who had just discovered something totally new.

Ch1ef_149 karma

What has surprised you the most because it looks nothing like you'd imagined?

Rozina_Issani297 karma

Before I received the bionic eye I could not see anything at all. But with the technology I can now see that the world in moving shapes and shades of light. When I first turned on the device I was amazed because I could actually see the doctor moving around me. It was incredible!

djmarder61 karma

So, can you turn it off easily, or at all?

Rozina_Issani11 karma

It’s very easy to turn on and off – just a flick of a switch on the waist-mounted computer!

Kandorr77 karma

Thanks for doing this AMA! And congrats to you and the medical team for this feat!

Is there an upgrade plan for this technology? Like, will you be able to 'trade it in for a newer model' at some time?

Rozina_Issani202 karma

So first, I should explain how the device works. First, a microchip is surgically implanted into the retina of the eye and held in place by a tiny 'tack'. That's the internal part of the 'bionic eye'. Second, I was equipped with a pair of glasses that has a tiny camera mounted on the bridge. From the glasses, a wire runs down to my waist to a small, battery-powered computer transmitter. The camera, since it's mounted to see what's in front of me, transmits the images it captures to the computer which converts it into electrical pulses that are sent wirelessly to the microchip in my eye. The microchip communicates these pulses to the remaining cells of my retina, which then go to my brain.

In terms of upgrading the technology, I'm told that there will be future upgrades to the computer technology, as well as the camera. But the microchip, that's there to stay.

I_hate_faggotry62 karma

Is the technology costly? Can someone from a third world country have access to this?

Rozina_Issani105 karma

I'm going to ask my friend Mary to help me with this one.

Mary: The technology is quite costly ($100,000 USD, plus the cost of the surgery - which is quite complicated and requires a specialized team). Currently, the device is approved for use in the United States, Canada, Europe and the Middle East.

malmajid974 karma

Hi Mary. My father has been blind for 20 years now as he's symptomatic for retinitis pigmentosa. I've contacted Second Sight a year ago and I was notified that the device was not approved for use in the Middle East. Could you please benefit me with where exactly in the Middle East is the Argus II approved?

Rozina_Issani3 karma

Hi, it’s Mary – I contacted Second Sight last week (to brush up on the science side of things to help Rozina with her AMA) and learned that the Argus device is indeed being implanted in the Middle East, but the person who I was communicating with did not specify the countries. I will reach out to them and see if I can learn more details.

dukeluke200060 karma

Hi there! Congrats! Who is responsible for inventing this tech? Is being tested in other countries?

Rozina_Issani99 karma

The Argus II, the device that I have, was developed and manufactured by a company called Second Sight.

This is Mary chiming in again: The Argus II is one of many devices being developed in a broader category of 'retinal prostheses' - which is a non-living, electronic substitute for the retina. There are a number of other retinal prosthetic devices currently being developed and tested. I've actually written a short overview of a number of these technologies you can check out if you'd like some additional reading: http://ffb.ca/everything-you-need-to-know-about-the-bionic-eye/

Melange_Powered60 karma

Thank you for doing this AMA Rozina and congratulations! May you have many many bright, colorful, and happy years ahead of you.

My question is: what is your favorite activity now that you're able to see, that you did not (or could not) enjoy before?

Rozina_Issani135 karma

Going for a walk is probably my favourite activity now. Before the device going for a walk was quite stressful. Now that I am able to see shapes and lines on the street, and make out objects or people I'm encountering along the way, I feel safer and at ease enough to enjoy my surroundings. I've had the device for about 14 months now and I'm still noticing new things when I'm out and about!

floatingfixed37 karma

Hi there, I have two for you! Thank you for doing this AMA.

  1. What are the limits of your sight (can you see general shapes, or specific details)? Can you read?

  2. Can you describe how it looks to see through this bionic eye?

Thanks!

Rozina_Issani71 karma

  1. I see mostly in shapes and shades of light, but have some minor ability to see details. The technology hasn't enabled me to be able to read, but I have started to write using very big letters and a dark marker so I can make out the contrast between the words and the paper. I'm doing really well so far I'd say - getting all the letters in a straight line and everything!

  2. When I see using the bionic eye I actually see the world like a 'film negative'. So lighter surfaces appear dark and vice versa.

another_question_24 karma

How long have you had the Bionic Eye? Do you see differently now than when it was first implanted?

Rozina_Issani50 karma

I've had the bionic eye for around 14 months now.

Over time it's become easier to use. I am able to focus and scan more quickly because now my brain is trained to use and understand the information from the device, and I've done a lot of practice.

CreativityLacking30 karma

Can you see colours?

Rozina_Issani80 karma

Unfortunately not with this version of the technology. However, I've just heard that the company who made this Argus II device is actually working to include colour in a 2018 version of the computer software. So that has me very excited!

INSERT_USERNAME___30 karma

Can you describe the differences between artificial sight and the vision you had before you became blind? Can you watch TV or use computers designed for people with natural vision without accessibility software?

Rozina_Issani64 karma

The differences between vision I used to have before losing my sight, and the artificial sight I now have, are drastic. Technology is evolving but we're still a ways from emulating real vision. With the bionic eye, I can see shapes that I guess could best be described as pixelated, or digital in nature. The device only allows me to see in black and white at the moment, and as I mentioned in a different answer, it's kind of like seeing things like a 'film negative'.

I can see movement on the TV now, which is an improvement over before, but overall I still cannot use TV or computers fully without accessibility software.