Retinal vein Occlusion: i'm a 58 year old... - Macular Society

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Retinal vein Occlusion

Opelman profile image
39 Replies

i'm a 58 year old afro caribbean guy, who's in my first year as an IT contractor, after twenty years as PAYE; I've had retinal vein occlusion in my left eye recently and will be having my first Eyelea intravitreal injection next month.

I've booked a day off for this first injection, but have been advised that I may need up to eight of these. as a contractor i'll be losing a days pay which isnt ideal.

question: how long does the eye stay blurred after the injection? is it possible to go back to work afterwards?

the thought of losing up to eight days pay is a big worry.

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Opelman profile image
Opelman
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39 Replies
thom3patty profile image
thom3patty

I also take the day off work unpaid but have been considering seeing how if last appt on a Friday is available then have the evening to recuperate and not have to work the next day is that possible for you

Opelman profile image
Opelman in reply to thom3patty

thanks thom3patty;

the appointment is at 9.15 on a Thursday morning unfortunately; its a point well made and I'll ensure that I choose a Friday appointment for the other appointments.

do you have RVO like me? if so, how's your experience been? I must admit I was shocked when I was told, as I cant remember having any symptoms beforehand.

thom3patty profile image
thom3patty in reply to Opelman

I have macular odema I am a dirt cintrolled diabetic but I lost weight very fast about 12 years ago like 100lb and brought my a1c normal but my eyes have not recognized that I am diet controlled I guess there was a big study on this and it’s rare but I have swelling in the back of the eyes is y I get eyelea injections and they cause my eye pressures to go up so I am now taking 3 different eye drops to help with that so as much as I dread my injections I am grateful to God they have them

Opelman profile image
Opelman in reply to thom3patty

It didnt cros my mind when I booked my slot; I chose the earliest available appointment, which happens to be a Thursday.

I will try and book Friday's but as the NHS is a pressurised, in demand service, whether I'll get one in a reasonable timescale, is another question.

thanks again for your help, and good luck with your eyes.

thom3patty profile image
thom3patty in reply to Opelman

You too 🙏🏻❤️

Fishing1949 profile image
Fishing1949

I have Eylea injections in one eye and find that the blurriness is clear after a couple of hours, with minimal discomfort, having changed from iodine to chlorhexadine. I usually have the injection first thing in the morning. I hope this helps but it seems that he impact can be different for each person.

Opelman profile image
Opelman in reply to Fishing1949

hi Fishing1949,

my first appintment is for the morning, and as I've taken the day off, blurriness for a few hours wont be an issue; its the subsequent injections I'm concerned about-on advice I'll book late Fridays wherever possible,NHS permitting of course.

thanks.

petr18 profile image
petr18

Hi. Sorry to hear about retinal vein occlusion. I have the same case and have had 8 eylea injections in 2 years. I start my job next day without any problems and you will see the improvement in vision within 24 hrs. All the best.

Opelman profile image
Opelman in reply to petr18

thanks for that petr18; 8 injections over 2 years is a fair spread of time. I assumed they would be closer together. thats put my mind at rest as it wont be an issue now as regards my contracting job status, possibly having to take regular days off with no pay.

at the moment, the top half of my left eye is blurred, and I find that apart from making my screen resolution larger on my monitors in the office, and my left peripheral vision while driving being poor,(especially at night), life is pretty much unchanged.

how much of an inprovement has your treatment been percentage wise? just so I have something to aim at. also has the treatment finished-was the 8 jabs enough to do the job?

qp3usavk profile image
qp3usavk

I also had BRVO 3 years ago. It happened out of the blue after a completely new blood pressure spike. I had one Ozurdex injection and was off work for one day only. Eyesight returned to near normal after 6 weeks. So your recovery should be pretty swift if all goes well and, 3 years on, I've had no more injections. I do take one BP tablet a day to control my pressure but, fingers crossed, you will be fine. Just protect your eyes from dust and foreign objects in work.

Opelman profile image
Opelman in reply to qp3usavk

thanks qp3usavk.

that further gives me hope for this treatment; the doctor at Moorfields said I'd never get my full vision back in the eye, so to hear this goes against what he said. I'm having Eyelea jabs though-not Ozurdex; how do they decide which to use? by the amount of damage done?

I too had a BP spike unbeknown to myself and I must admit I dont keep an eye on my BP despit having a monitor at home that wifey uses to monitor hers.

I relied on being physically fit and eating reasonably healthily as well as taking my 10mg of Amlodipine on weekdays.

qp3usavk profile image
qp3usavk in reply to Opelman

I think it depends on the patient and whether they are at risk of glaucoma and high eye pressure, which is the main side effect of Ozurdex. I reacted well in that it did its job of reducing swelling and restoring vision, but I did have to take eye drops after 6 weeks when my eye pressure went up sharply. The dr also said that because of this, any further injections would be non

steroid, which I presume is Eyelea. Luckily for me, the one did the trick but I know several people who have Eyelea and it does the same job, though more may be needed to get a stable eye. I did have scarring on the retina from the initial bleed, which will always be there, but it doesn't really affect my vision. So stick with it and see how things pan out after the 1st one. You don't state whether you have CRVO or BRVO. The first is, I've been told, more difficult to stabilise as it affects central vision, whereas mine blocked a side vein. Good luck and you will be fine!!

Opelman profile image
Opelman in reply to qp3usavk

hi qp3usavk,

I have CRVO in the left and BRVO in the right,(although vision is fine in the right).

is it worth preparing the eye a few days later as described by Maryvic? if so what do I buy, assuming from a chemist. also her point about taking an acetaminophen-type med-again from a chemst? and what's an NSAID?

questions questions..

in reply to Opelman

Hi, I use Hylotear drops which are thicker than many others and work especially well in cold weather.

Maryvic profile image
Maryvic

Hi Opelman, I receive injections of Lucentis every 8 weeks for Central Retinal Vein Occlusion. I started with every 6 weeks several years ago, so time between shots has increased.

Here’s the regimen that seems best for me - most of steps I have learned from this site.

Prepare your eye before your injection. Meaning use drops, preferably a gel drop, for a couple days before the injection. You don’t want the eye to be on the dry side.

Do take some acetaminophen-type med before and after. Also, an NSAID may help before and/or after.

If betadine is used in preparation for shot, request several rinses following the injection - like the entire bottle!! It seems many folks do have a reaction to betadine which can cause a lot of discomfort for 12-24 hours following.

Along with a thorough rinsing, request that a patch be placed over the injection eye. After many years...this was recommended and it has made a huge difference for me. I think it helps to keep the eyelid immobilized as much as possible. Salty tears from the eye’s reaction to betadine can result in further discomfort. After 4 hours or so, I remove it and have no extreme pain like I had over the previous years. I do sit in a dark room with soft music to “sleep it off” when I get home.

This said, everyone’s experience is different. It may be a walk in the park for you! I hope so!

Do use this site for helpful advice/ideas on managing your injections. Best of health! 🌷

Opelman profile image
Opelman in reply to Maryvic

Mary,

can you advise on what dry eye drops and acetaminophen-type medication to buy before my first injection please?

Maryvic profile image
Maryvic in reply to Opelman

Of course! I use a gel drop, Genteel, which also comes in an ointment. I have used the ointment night before injection, but not always. There are other brands as well.

Acetaminophen is generic name for Tylenol. In the UK it has a different name that starts with a “P”.

NSAIDs are Ibuprofen (Advil) and Naproxen (Aleve). (Don’t mix the NSAIDs, just stay with one or the other)

Hope this is helpful. 🌷

Opelman profile image
Opelman in reply to Maryvic

thanks for this Maryvic.

I'll order Genteal to use before my 1st injection next month.

Ayralin profile image
Ayralin in reply to Opelman

Here in the USA, actaminophen is generic for USA brandname Tylenol. In the UK it is called paracetamol.

Catseyes235 profile image
Catseyes235 in reply to Opelman

If in UK Superdrug have Moisturising drops - usually with an offer on if you buy two. Cheapest and best I have found.

Maryvic profile image
Maryvic in reply to Maryvic

FYI - in another post it was explained that the grittiness/sandy feeling in eye, post injection, is due to the Betadine forming crystals which then cause the soreness, which then causes salty tears, which then create the pain...🥴. Just sayin’

So several thorough rinses are very necessary. 🌷

qp3usavk profile image
qp3usavk

Mary knows her stuff! Yes, you can try all of those things as it can only help. I just went in and that was that but only one eye was affected with me and I had virtually no vision in it, prior to the jab. So I was desperate for help! I did get dry eye and grittiness/redness for a few days after but nothing to worry about. Good luck and let us know how it goes. Vision improvement will be subtle and nothing will hapoen overnight!

Opelman profile image
Opelman in reply to qp3usavk

thanks qp3usavk. I'll definitely take what Mary said seriously as being prepared always makes sense, especially with something like this.

Kraven profile image
Kraven

Opelman - so sorry to hear about our mutual problem. Have been receiving injections (Eylea) in my right eye for the last 3+ years. I have found that the distortion in my right eye seems to have stabilized somewhat and is not any worse. I received injections about every 5-6 weeks. I have found that if I get the injection late in the day (3:30 PM on) and then go home and go to bed - that by the next morning all of the discomfort (feels like sand in my eye is gone). Eye drops help some (Artificial Tears). Unfortunately the problem is now occurring in my left eye and have had one injection to date. On the day you have the injection (because of all the drops) I would not try to perform you IT duties that day. The next day you probably will be able to function as you can now. I receive two injections at each doctor's visit (the first one is inside my lower eyelid and is to numb everything). The second injection into the eyeball is actually the Eylea injection and it is not painful at all. My first visit I received only my injection in the eyeball and due to severe pain I was not quite sure I would go back for more at any time real soon. He informed me that he could do this double procedure and I would recommend this to you and everyone out there. Yes 8 times you will loose time from work but if you could make it on a Friday late in the day and then you would have the whole weekend to recuperate and only miss a small amount of time on that Friday. Hope this helps. Vern

Opelman profile image
Opelman in reply to Kraven

much appreceiated Kraven; I only joined this forum earlier this week and already I've received so much information on my condition-absolutely amazing. I'll definitely have the double procedure as you say, and as I'm off that day, I can go home to recover in time for work the following day.

Kraven profile image
Kraven

Also recommended take ARED-s vitamins (2 per day) is essential. Thanks Vern

Opelman profile image
Opelman in reply to Kraven

are these over the counter Kraven or from my doctor? also are these pre or post op?

Ayralin profile image
Ayralin in reply to Opelman

Over the counter eye vitamins.

fed13 profile image
fed13

Dear Opelman; glad you've had so many useful replies. I maybe missing a point here, but what kind of contract are you on? Is it that you only get paid for days you work?

There's a LOT of controversy about the so called "gig" economy! Ken Loach is red hot on this: witness his films "I Daniel Blake", and "Sorry we missed you".

Can you not have paid days off for what are VERY necessary medical appointments?

You need to get advice on this from Citizens Advice Bureau on this.

You can get in on the internet and phone, or they may recommend an appointment.

Good luck....keep looking on the forum and contact the Macular Society too for info' and advice.

Opelman profile image
Opelman in reply to fed13

hi fed13.

I'm on a standard IT contract and am paid by the day; this is standard practice in the IT industry, so no sick or holiday pay; although my deal gives me 20 days paid holiday, which I negotiated.

SHELBY427 profile image
SHELBY427

I also have Retinal Vein Occlusion. I need a driver and my eye is patched until the next morning. The best bet is too get the latest time slot after work. Have someone drive you, and return to your job the next day.

Catseyes235 profile image
Catseyes235

If you had to take 8 days off there would be something wrong! As long as you make sure your eye is well washed out, to clean out the iodine (if not it can crystallise and feel sore and gritty) and make sure you have a new unopened therefore sterile bottle of eye drops, to keep on using whenever necessary after treatment to clear and soothe any grittiness, you should be fine.

Take dark glasses with you to protect from bright lights and rest up with a couple of paracetamol if needed. I now have injections in both eyes and the Avastin does make things misty for a few hours whereas I’ve had no problems with Eyelea. What you must avoid for 5 days after treatment is dirt and dust and therefore any chance of infection, as it takes a few days for the injection site to fully heal. So no gardening, DIY or walks when it’s windy out. Otherwise carry on as usual and be good to yourself. Take the opportunity to be good to yourself - I always treat myself to something I wouldn’t normally have or just fancy ...cream cake, fish and chips are my simple pleasures as well as vegging out watching telly! All the best.

..

Opelman profile image
Opelman in reply to Catseyes235

very useful advice Catseyes235; I'll follow this advice on the day, thanks.

susiehun profile image
susiehun

The blurryness is due to the eye drops they put in to dilate pupils and anaesthesia its blurry for a few hours that's all but shouldn't stop you going back to work if sight in right eye is ok but maybe just have that day off see how it goes .. I lost the sight in my left eye due to a central retinal vein occlusion but mine was iscaemic so caused a stroke in my eye so I definitely couldn't work that day as my right eye being blurry from the injection is difficult fir me as I cannot see out if my left .. I hopefully am finishing my injections I've had them for just over 2 years and last few scans have been dry but i now need a cataract operation in my right eye and it will be closely monitored in case I need further injections.. but you will be fine I'm sure. Good luck

Opelman profile image
Opelman in reply to susiehun

thanks susiehun and good luck with the cataract operation.

susiehun profile image
susiehun in reply to Opelman

Thankyou

Lizjim profile image
Lizjim

Everyone is different ,most times I am fine after a few hours ,other times it takes longer ,I'm sorry but there's no definite answer to this ,good luck anyway.

Opelman profile image
Opelman in reply to Lizjim

yes it seems that way Lizjim.

Bazza1234 profile image
Bazza1234

I have CRVO - I had about 6 Lucentis injections , which finally reduced the macular swelling edema - but alas the vein blockage meant that the cells of my retina had starved and died. never ever got past the "count the fingers" test for visual acuity. I stopped having the injections as it became obvious to me that they are merely a "treatment" and not a cure for CRVO.

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