Vision Loss - Vitrectomy - Questions


#1

Hi all,

(This got long, so I'll ask the question here, feel free to read the story below if you wish.)

*I've lost a ton of vision, am struggling to function, and would like suggestions for adapting and or getting by day to day from others with vision loss.

It has been a while. I'm struggling with visual impairment and looking for some advice. I have had retinopathy for the last few years. Two years ago I had laser done on both eyes. In April of this year, I started having severe pain in my left eye, which I ignored. When the pain went away two days later, I had lost a ton of central vision. Two weeks later, severe pain in my right eye, this time so bad I was nauseous. I saw my retina specialist as soon as possible, but not before losing everything except the faint sense of white light in that eye. I had retinal detachment in both eyes, the right worse than the left. I was told I needed a vitrectomy in both eyes, and that it was my only option. The right eye was done September 10th. The retina has reattached. During surgery, an oil bubble was placed. Since then, I've had a blood glob which floats to the top in that eye, which is just slowly starting to break up. I know this per my specialist and because I can see some diluted blood in the oil around the edges of the glob now. I've developed a cataract in that eye, which I'm told may be able to be removed when they remove the oil. I wasn't told until after the oil was in that it was another surgery to take it back out. Oh well.

I'm now being told the left eye may be stable enough to forgo surgery. I've had 1 of 3 laser treatments on that eye recently, and another this coming week. If I am thinking correctly, this means that eye doesn't ever get any better than it is right now. Not sure how I feel about that.

Anyway, all that to ask this. Can anyone here who shares my struggle with vision problems offer any advice or tips to get by? I have nothing usable in my right eye now, and until that next operation, possibly in January, I won't know what I get back in that eye. Post surgery before things clouded up and diluted blood took over, I was seeing more in that eye but nothing in my central vision. I can't see to read, drive, or do much of anything. I can handle insulin shots only using my cell phone camera to zoom in as far as it will go. I manage to use the computer zoomed in to 1000 percent, but panning side to side for each line makes reading take forever. I've been out of work since April. I'm just looking for some insight into how others manage day to day. Any suggestions for adaptations I can make to make this easier. Ideas on how others manage to work, or get to work. As I said, I can't drive, public transportation would be about 4 blocks away, and other health issues make walking out of the question.

This really sidelined me. Other than doctors' appointments and the occasional trip to the grocery store with a family member, I haven't left the house since April. I'd really like to get back to whatever normal is going to be with these problems.

Thanks in advance,
Ryan


#2

Hi Ryan. Sorry to hear about all your problems. I have vision problems too so I know your pain. I have had tons of lasering and vitrectomies in both eyes. I currently take shots of Avastin every couple of months to keep things clear. It’s no picnic to have a shot in the eye but it’s over very quickly and it does work. I have cataracts too from all the work I have had done. Lucky for me, I have not had to deal with a detachment.

Today my vision is decent but that has not always been the case. I have gone for months at a time with one or the other eye completely filled with blood so that I couldn’t see. It takes 2 seconds for your eye to bleed but 2 months for it to clear out.

I also have no peripheral vision which means that I bump into a lot of people and things. I have become rather accident prone. I can drive but only during the day. I don’t even like to be out of my house after dark. I work but I use a lighted magnifying glass for close up work. It’s on a stand so I have hands free. I have increased the font on all my work so I can read it. I have family around me so I have people who can drive me if its after dark or to the eye doctor.

The world is a whole new place when your vision is compromised. It’s scary!!

A few words of encouragement… Blood in the eye can clear out very nicely. It takes a while but it can happen. Cataracts can be removed. Retinas can be reattached. Avastin shots work very well to keep bleeding under control. I’m confident that you will have better vision than you currently have. It’s going to take time and patience.

In the meantime, get a lighted magnifying glass, or two, and set them up at places where you sit around the house–desk or bedside. You can use a magnifying glass to read the computer screen which might save you from have to scan so much across the screen to read. I keep a little hand held magnifier in my bag at all times. My friend at work says I look like Sherlock Holmes. I have had fully sighted people at my office ask me if they could use my magnifier to look at something for a minute.

If the day comes where I am significantly less sighted than I am now, then I guess I’ll just be at home. I plan to watch a lot of tv then. With HD tv, I know you can still see the tv with relatively little vision.

I hope things get better for you. I think they will. Best of luck, Cindy.


#3

Hi Ryan,

I am sorry to hear about your vision loss and struggles with retinopathy. I hope that your vision improves, but I will respond with resources that you can use now and in the future if your vision continues to be impaired. Please know that it is possible to live a full and independent life with vision loss! It requires putting in the effort to learn to do things in a new, sometimes creative way, but there is little (except for driving) that you have to permanently give up because of vision loss.

I have been legally blind my entire life due to retinopathy caused by my premature birth. My vision is such that I can see print if it is magnified greatly and I can get close to it. I can see objects in my path, but not changes in elevation. My vision depends greatly on the environment, and there are some situations (at night, in a dimly lit restaurant, when facing windows, when sun shines in my face) that my vision is almost nonexistent. I use a combination of large print and braille for reading, I use a combination of magnification and screen reading software on the computer, and I use a white cane when out and about. I have been to university to complete two bachelor's and a master's degree, I hold down a full-time job, I travel to other cities independently, I live alone and do grocery shopping and other errands independently, and I have a full life volunteering in my community, socializing with family and friends, and keeping hobbies ranging from writing to computer programming to learning French and photography. All this to say: please do not give up on living a full life and accomplishing your dreams, even if your vision loss turns out to be permanent.

I would highly recommend that you get connected with your state's blindness rehabilitation program (this is not just for people who are totally blind, most of their clients have some degree of useful vision). They can provide you with services such as working with an orientation and mobility instructor to learn how to get around your community and use public transit independently. If you have other disabilities that affect walking, they have experience working with individuals who (for example) use a walker or wheelchair in addition to having a visual impairment. They also have rehabilitaiton teachers who teach techniques for cooking, doing chores, cleaning, and so on. A technology specialist can help find the right combination of technology so that you can not only access your computer but use technology to access things such as books and even read printed mail. These agencies also sometimes provide other services such as counsellors who can help with the adjustment process.

If you are interested in learning some things before you get connected with services, the Hadley School for the Blind offers free correspondence courses in a variety of subjects, from labelling items around the house to learning braille and how to use a computer to courses in adjustment to blindness and diabetes and vision loss.

There are some things that you can do right away to make things easier while you look into some of these services (or if you only need temporary assistance). Like you, I use 1000% or more magnification on the computer. There is software called screen magnification software that can magnify the entire screen at once, and follows the mouse as it is moved across the screen so that no scrolling is necessary. ZoomText is the most popular screen magnification software and is available for Windows and Mac. It is quite expensive, but if you need it for school or employment you may be able to get it for free through funding if it's something that an assistive technology specialist recommends. In the meantime, there is a trial version that you can download and that functions for 60 days. It includes font smoothing features that make font look clear instead of pixelated and blurred like it does with built-in zoom tools. I also use speech output on my computer that voices everything that happens on the screen. This is called screen reading software, and although it can have a steep learning curve, it is well worth it (in my opinion) if you are relying on high levels of magnification as you are. It allows you to accomplish all the same tasks that you normally do with a mouse through the keyboard and speech, which is much easier than scrolling around a screen that only shows a few letters at a time to find something. If you are interested in checking screen reading software out, there's a free and open source program called Non-Visual Desktop Access (NVDA) available for Windows. JAWS is another popular choice, but it is quite expensive and more useful for employment situations due to its features and customizability (again, something you may be able to get through funding if it's recommended). If you are a Mac user, there is a screen reader called VoiceOver already build into your operating system.

For managing things around the house, there are so many little ways of making things easier. You can put tactile bumps on stoves, washing machines, dishwashers, and microwaves so that you can use them independently. If you know braille, you can use braille to label a huge variety of items. You can hook a finger over the lip of a glass as you pour liquid so that you know to stop pouring as soon as the liquid touches your finger. If you're pouring a hot drink, or a drink for someone else who doesn't want your fingers touching it, then you can get devices called liquid level indicators which been or vibrate as liquid approaches the top of the cup or glass. You can put an elastic band around your shampoo container so that you can distinguish between shampoo and conditioner in the shower if they feel and look the same. For reading mail and other print, this is where technology (that you may be able to get through funding) is useful - you can get video magnificaiton or scanning devices that enlarge or read aloud mail, magazines, and books. Devices such as the iPhone and Kindle also have built-in magnification and screen reading features that make accessing ebooks and other content accessible. There are also sites like Bookshare that offer a library of accessible books to anyone with a print disability.

Are there any hobbies that you miss doing? People often think they have to give up hobbies they used to love, but this is usually not the case. If you let me know some of your interests, I can see if I can point you towards some resources.

For managing diabetes, I would highly recommend you switch to insulin pens instead of syringes. Insulin pens have a tactile click as each unit is measuresd, so it is possible to use them independently with little or no vision. Although most diabetes technology is not accessible, there are two talking meters on the market, one called the Prodigy Voice and one called the Solo V2. I have not used either, as I can see my meter screen if I hold it close as long as it has a backlight, big font, and high-contrast display.

I hope this information helps and isn't too overwhelming. Learning to use new tools can sometimes be difficult, especially in the case of something like a white cane or braille. If one of these is something you are interested in learning or that is recommended for you, please see it as a tool for independence and not a sign that you can no longer do things.


#4

Great responses below. 10 years ago I had a detached retina, surgery and vitrectomy. The doc said there was an 80% chance of vitrectomy patients getting a cataract, which I did, and it was popped out in 1/2 hour. I also had the bubble. I can see reasonably well except that I lost a great deal of peripheral vision. But, I guess we adapt. I also am not able to drive and even after 10 years, it still bothers me.
I think the hard part about your current situation in addition to adapting to your daily living situation, is the "wait and see" deal. But, from what you're telling me, I think you have a reasonable chance of regaining functional vision, with all the current treatments available.
4 years ago I had cancer surgery and immediately after, all my organs shut down and I was not expected to live. But, after a long, slow recovery, I am doing pretty good.But I was forced into unexpected early retirement, and man, it was incredibly hard just so sit around all day. SO I know what you're going through regarding the job.
Ryan, all my best wishes to you and your healing. Please keep us updated.


#5

Ryan, I am sorry you are going through such hard times. I also have vision problems much the same as you have described. I have had four surgeries on my right eye this year, and a couple laser treatments on my left. I have lost all the peripheral vision in my right eye and what is left of my vision in that eye is very blurry due to oil they put in to keep my retina flat. I am told the oil will never be removed because if it is my retina will detach again.

Like you, I also have walking problems. Mine are due to neuropathy that makes walking very painful. So as far as dealing with my vision issues, I rely a lot on my husband to read small print for me, and to hold my hand and guide me in dark environments because I also have very little night vision left. I also have lost a ton of depth perception so I need to hold on to someone or something when using stairs and such. I take advantage of my wonderful and helpful friends to give me rides when I need to go places. It has been a huge adjustment to the loss of independence, but learning to accept help from friends and family is a good thing.

Since my vision is not as impaired as yours all I can really say is to wish the best for you and hope that you can find many good ways to get along without your vision. Good luck and all the best to you. :)


#6

Tamra,
I seem to have lost central vision and what I have left is peripheral. My left eye is my better eye right now. I'm a little uneasy about the laser in that eye, as I feel like I lost some vision with the last session, and I worry how much I can afford to lose before I can't read even while magnified. I'm sorry to hear about the oil not coming out. I'm not sure how much of my lack of vision in my right eye is due to the oil, as opposed to what I just won't get back. Right after surgery, I had a lot of very clear vision to the left and right, and a little to the bottom, but the central vision was just white still. As the blood has started to clear, I notice if I tile so that the blood clears away from the top of my eye, I seem to have a fairly good amount of clear vision to the top, so I hope that is good news when that clears.

I also have some neuropathy, and that is one of the issues with walking. Not so much painful, I just can't feel where my feet are very well, and not being able to see, I stumble and trip a lot on unfamiliar surfaces. I also have very little vision at night. I have to use a flashlight to walk down our sidewalk to take the trash out at night or I end up off in the flower beds. Haha. I find holding on to someone throws me more off balance, though I do seem to run my hand down the wall or other surfaces a lot to keep myself oriented and sometimes for stability.

I've had a hard time asking for help from others. I guess I haven't accepted that this is how it is. I feel like a bother to ask someone to take me to the store or anything else.

Thank you for the kind wishes.
Ryan


#7

Kathy,
While my doctor didn't mention cataracts, I had done a lot of reading before the surgery, and understood that there was a high probability for them. I just didn't realize it would be so soon after. I'm ok with that part, though really hoping my doctor is able to remove it when he takes the oil out as opposed to another surgery. I was told he won't know if the time to do so is right until we get closer to that. When I first saw the doctor and found out I needed surgery, he said he could only give a 50 percent chance that he could save any vision at all. So I guess, all in all, regardless of what happens with my right eye, the fact that he doesn't want to operate on the left eye anymore is a blessing.

The waiting is absolutely killing me. I've got a half finished boat restoration project sitting out in the yard, and my truck out front, and all I keep wondering is if I need to start thinking about selling them.

I completely understand the struggle with cancer. My mom was diagnosed with cancer in 2007, and I watched it take her to what looked to me like the very edge of death. Like you, she was forced into early retirement. She's been healthy and doing very well since treatment. I hope all continues to be well with you in that regard.

Thank you for taking the time to reply, and for the well wishes.
Ryan


#8

Cinderfella,
I had a single Avastin shot in my right eye a week before surgery to calm things down. It was much less of a big deal than I had worked myself up for it to be prior to having it done. I would say it hurt enough for me to wince a little, but nothing like I expected.

I know what you mean about how fast the blood appears, and how slow it is to leave. The blood in my right eye now isn't the first time I've had a bleed and had to wait for it to clear up. Before my surgery, I read a post here of someone's experience with a vitrectomy and knew it would be a very very slow process to get back to seeing whatever I would. That was very helpful going in, but at this point, I'll admit it is starting to drag on a bit.

I also have a hard time seeing at night, and unless I absolutely have to, prefer to just stay in after dark, as I otherwise trip, bump into things, and just don't enjoy feeling like I can't manage getting around.

I've been considering a lighted magnifier, though haven't really looked hard for one yet. I typically don't leave the house without my cell phone, as its camera is the only way I have been able to do shots, or read any print which I haven't printed myself. If I print something, I don it with at least size 24 font and bold. That helps.

I watch most of my tv on the computer, also zoomed in, though to see the full video area, I only zoom to about 200-300 percent while watching. I've pretty much always watched my tv on the computer, so that wasn't a big change for me. I have to sit up fairly close to my 24" monitor to see it. If I try to sit back, or watch on a tv across the room, unless I focus my vision way above the tv to see it in my lower field of vision, I only see white, and can't make anything out.

I thank you for the encouraging words and well wishes.
Ryan


#9

Jen gave an excellent response. Learning new skills to be able to do things makes life easier. I have the same disease Jen has ROP. Do you have a prodigy meter that you can test with? See your CDE to get assistance in dosing your insulin. Good luck, I live a very active life even with my vision loss. Nancy


#10

Jen is a wealth of information.


#11

Jen is a wealth of information.


#12

Jen,
I was hoping if I only got one reply here, that it would be from you. I've read some of your past posts, and seen how well you manage with vision impairment. I appreciate the tips you gave. I knew there had to be a way for doing things, I just wasn't sure where to look to find it. I understand what you mean about getting creative to do things. For not having reached out to anyone for help with this until now, I think I've done a pretty creative job at getting by. As I said, I've been using my cell phone camera for a lot of detailed stuff, screen magnification, and for the most part, as long as no one touches any of my stuff, I put things right back where I grabbed them from, and have learned fairly well where I have everything without needing to analyze it with the cell phone.

I have also met the criteria for being legally blind. I am able to read large font, as you say, if I can get close enough to it. As for seeing what is in my path, if I focus where it falls in my good peripheral vision I can make it out. If something is in my central vision, it typically is faded in a blind spot for me, and I won't see it. I know what you mean about the environment. Bright light washes out my vision, almost like sun glare on a dirty car windshield. I can't see if it is dark, if light isn't hitting something at the right angle, or if it is is too bright. I think this confuses my family, as sometimes I say I can't see that, its too dark, and other times I say that's too bright, I can't see it.

Everything you've accomplished and manage to do is exactly why I hoped you would reply to this. I'm curious, what programming do you do? I had QBasic, Visual Basic, and C in high school. A few years ago, I taught myself a little html, and php as well as sql. Its been a while, and I'm sure I would be pretty rusty, but I enjoy it when I get into it. I work as a tech in a retail store, mostly doing desktop support. I'm currently studying for my Cisco networking certifications.

My mom had tried to get me set up with the state's commission for the blind some months ago, and they needed my vision records from my doctor. I guess I didn't really want to admit I needed the help at the time, and never got the records to them. I will look into that again. I think I have done fairly well with managing chores and things around the house, but I do struggle with cooking and getting around outside the house.

I actually do use full screen magnification on the computer. I'm using the built in feature in Windows 7. I use the mouse following, though it still takes me longer to read. I will take a look at the magnification software you mentioned. I've tried the built in screen reading software in Windows, but it seems to me like it jumps around a lot, or I just don't understand how it functions to work with it properly. I'm a computer person by nature, but this is something I haven't had much luck with. I will also be looking into the two programs you mentioned for screen reading. I like free and open source, though if the other program's features seem like I would use them, I will look that way as well.

Though I haven't really tried the stove, other things like the washer and dryer, microwave, and whatnot I am doing ok with. I know by memory the location of all the settings I need on them, and can make out enough to count my way through the number pad on the microwave. It is interesting what you start to figure out when you have to look to other ways to get along. Someone asked me the other day when I made a comment about where we were on the highway how I knew where we were. I went into an explanation of how I knew the double overpass to be a certain exit, and I had been counting exits down since that point.

I think some type of video magnification would be very helpful to me. I have been getting by reading important mail, but optional things like newsletters and the like I have just been piling up, as it takes too long to read. I've mostly been doing ebooks on the Kindle PC app for a while now, so that, combined with screen magnification have been ok, though again, it takes a longer time for me to get through things.

I have not really been able to do much work on my boat or truck, so I miss doing that. I have kept up ok with other hobbies. I do a lot on the computer, and always have. I've been working hard on a networking certification, and still trying my best to chip away at that, though its gotten a lot slower with my reading speed slowing down. I spoke to the testing center for that, and they can accommodate with screen magnification and a time extension when I am ready to test. Other than that, I am also a licensed amateur radio operator. I've been able to continue with that, again, with some adaptation. I have pretty well memorized the layout of the controls on my radios, but still use my cell phone from time to time to see less frequently used features. I log my contacts on the computer, so again, screen magnification helps there.

I tried a pen a couple years ago, but didn't like how bulky they felt in my hand. I just envision dropping it while injecting and with a syringe, when I have done this, it just hangs there, where the pen would fall out and...ugh. I guess that's just a mental thing. I also do ok with my current meter. I have to use the cell phone when going back through the memory, but as far as testing, I can see the bold readout well enough with the backlight.

This was very helpful in getting me looking into things that will help. That's what I have needed. I knew there had to be a way, I just didn't know what it was or where to look. Adjustment and accepting this have been what I've really struggled with so far. I really appreciate you taking the time to write such a detailed reply.
Thank you,
Ryan


#13

Hi Ryan,

My family has known me for over 30 years, and I still think they sometimes get confused by my vision. It used to bother me that no one else truly understood how I saw the world, and that everyone who saw me using a white cane assumed I had no vision, but it doesn't bother me now. If someone thinks I can or can't see something, I just correct them and move on.

It definitely sounds like you've come up with some creative solutions so far, which is great! Once you get connected with services there will be a TON of things that they can teach you. That way, you don't have to "use up" your creativity figuring out how to access things like the computer or library books or cooking, because because technology and techniques have already been invented - instead, you can use your creativity to come up with solutiosn to problems that haven't been solved yet. For example, I can't see the photocopier at work, so I worked with a colleague to set up a shortcut and put a transparent tactile bump on the spot I needed to press. No one else has even noticed, and it allows me to send documents from the photocopier to my e-mail account without having to ask for help.

Adjusting to vision loss can definitely take a psychological toll. I'm glad that you're reaching out now. That is a huge step! Keep in mind (coming from someone who hates asking for help!) that you are setting yourself up now so that you will be more independent later - so even though you may feel like you're relying on a ton of support up front, it will pay off in the end when you have the training and equipment you need to get out and do things independently.

The built-in screen reader in Windows 7 is terrible and nearly unusable, so it doesn't surprise me you've had trouble trying to use that! It only reads part of what is on the screen (i.e., it can't read HTML content) and there are few commands to control what is being read. More full-featured screen readers like NVDA and JAWS provide an astonishing number of controls so that you can move around the computer screen and specify exactly what information you want spoken. Do you already know Windows keyboard commands? If you do, you'll have a huge jump start on using a screen reader. Also, if you have NVDA or JAWS installed (even a trial version of JAWS, I believe) and download a Kindle accessibility plugin, your Kindle for PC app will have commands that let you have books read aloud. If you have an iPhone or an Android phone, they have features called VoiceOver and TalkBack which provide speech output (although some apps are not accessible, but many, such as the Kindle app, do work well).

In regards to programming, I taught myself HTML and CSS when I was in high school and shortly thereafter, as well as a little Visual Basic. More recently I've been teaching myself Python, SQL, and PHP. I've also written a few scripts for JAWS (another great thing about JAWS nad NVDA - they can be scripted to work well with any application, even if it doesn't work well initially).

I forgot to add in my previosu post that you may also want to get connected with the National Federation of the Blind (NFB) or the American Council of the Blind (ACB). These are both organizations made up of blind individuals. They don't provide rehabilitation services per se (although the NFB does have some natioanl training centres), but they both have monthly publications, an online store with books and resources, mailing lists and online radio stations, and state and national conferences that are all fantastic resources for connecting with others who are living with vision loss. I actually saw a video from the NFB about a member building his own boat, and I know that there are quite a few ham radio operators who are blind, so it may be a good resource for getting back into hobbies or discovering new ones.

I'm glad that you found my post helpful. Don't hesitate to ask if you have any other questions about resources or living/working/etc. with a vision impairment.


#14

I know what you mean about correcting them and moving on. Its not worth eating up the time to dwell on.

I definitely look forward to seeing what help these services can offer me. If I can break away from my study group long enough today, I will be looking into the screen reading software, as well as the courses you mentioned being available.

I am also one who hates to ask for help. I guess I've always been that way. I always try to research and figure out how to do something on my own before I reach out and ask someone.

I'm glad to hear the screen reader issues were not just me. I'm well versed in computers and it bothers me if I can't figure something out.
as I mentioned above, I am going to try to look at the other readers today. I am familiar with a lot of the common keyboard shortcuts in Windows. I've wondered about anything to use on my Android, so I will take a look at that. I do ok with things I know the location of from memory, like getting into the camera, using the flashlight app, or dialing if I know the number. What I struggle with is anything on there I have to read, like contacts, text messages, etc. I use Google Voice, so I've just been managing my text messages on the computer, where I can zoom in on them.

Knowing these programs can be customized is probably dangerous for me. It is what led to me learning PHP, SQL, and HTML. I was working as a 911 operator at the time, and our software was not very flexible in how it let us look up locations, so I got the address data files from the county land use department, and wrote my own system with more search combinations. Basically, if I don't like how something works, or if it doesn't exist, I tend to figure out how to change that. One day I would like to get back to that and add a mapping component to it, and see if I couldn't end up selling it. I bought a book on CSS when I was working on that program, but never could get into it. At the time, I was still working out functionality in what I was writing, and CSS kind of took a back burner. Maybe one day I will get back to that, after I finish some other things I'm working on.

I'll take a look at what these two organizations offer as well. I have spoken to a few ham radio operators who also share vision problems, and actually came across a group that meets on the radio once a week from all over the country who are all visually impaired. I've only run across them once, but am still looking for them again.

I'm sure as I go I'll have more questions. Thank you again for all of this wonderful information.
Ryan