I started having injections March last year,firstly on a four week basis,since then it's continued as every six weeks. I was told there are twenty ophthalmologists the hospital so I may not get the same answer to my questions from all of them, however, so far they the ones I've seen have all agreed on the course of action until today.
In August last year I was told the scarring across the central vision my left eye was so bad that it wouldn't improve, even if the injections in that eye continued, so the result was, I'd continue with injections in the right eye only.
Every specialist I saw agreed with this until today. I'm a mild mannered person but will only take so much of being messed about.
At the hospital,it usually goes -eye chart first, then look into the bright lights and puffs of air blown into my eyes while photos are taken, see the specialist then go have the injection. But today,I read they eye chart and that was it. The specialist came to talk to me and actually said " Your left eye has improved and your right eye has responded well so we're going to stop all injections"!!!
(warning; - sarcasm) Oh wow! So now either severe scarring across the central vision can cure itself or the injections have suddenly become a cure!
My being a wheelchair user sa well as having low vision, I actually raised my voice and wheeled myself out of the hospital I (know, it's less dramatic as stomping off 😕) .
i was sat outside waiting for ambulance transport when a nurse came out and asked if I'd reconsider going back in for the injection,I declined saying not 'while that specialist is in there'. I was asked if I wanted to continue the injections after today's issue,I did say yes,I do.
i really can't believe that specialist though, if I'd gone along with her suggestion and stopped the injections, more so after losing my left eye sight within five months, it would/could have meant I'd have completely distorted vision with blank areas in both eyes by this December.
It takes me a long time to trust anyone within the health and care sectors, so when I finally do, it's an awful feeling when someone in a trusted position over my health ruins it.
Has anyone else had this or similar happen? How did you handle it?
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kohai
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I will thanks. I googled Pals for Wales and added their phone number and email address to my contacts list so as not to forget it. I'll see what they say. Given how many this one hospital do injections on per day, it doesn't bear thinking about on just how many patients have been told the same thing as me, about stopping the injections. Sadly I know the consequences of my not having the injection today and waiting another six weeks for the next one, but to be honest, after what I was told today by this so called opthalmologist, it's a small price to pay. I wasn't prepared to go back in and risk the chance of her interfering. She actually determined my badly scarred eye had improved purely by my attempt to even see the letters on the chart (I haven't been able to make out even one of them in months). So how on earth did she come to that conclusion... the mind boggles!
Hi kohai. I've never experienced anything like that and I hope I never do! That was pretty shocking in my opinion and it seems that the right hand doesn't know what the left hand is doing at the hospital. I agree with Koalajane about taking it further and I also agree that maybe you should ring or write to PALS. You could also, maybe, contact the Macular Society Helpline and ask for advice. 0300 3030 111. Good luck, you should have clarity about your treatment not confusion. Let us know how you get on. xx
I will thanks. And I agree, no-one should have to go through or be told this, even moreso when we know 1) that stopping the injections, the sight will worsen our vision dramatically and 2) while we know researchers and the macular Society are all working hard to find a cure, currently none exists. Stopping injections certainly won't cure it, if it did, many of us would have stopped having them. I'll phone the Macular Society first tomorrow, see what they think, then phone PALS. I keep going over it in my mind.. if I'd had the two different usual tests first, telling me my right eye is improving sounds great, but what she said was so far fetched it's unbelievable. She seemed more concerned why I kept dozing off, I said I'd had next to no sleep for two nights due to the heat that I'm exhausted. She still asked me that same question four times and seemed more concerned about that than my eye tests. I mean, really! likely three quarters of the uk has had a hard time sleeping in this heat.
Whilst I empathise with you and certainly don’t suggest this is the case for you, but injections can and do cure the problem sometimes. I had amd in my right eye 5 years ago. I may well have caught it early but underwent 4 weekly injections which were extended to 3 months. Then in the absence of any fluid after 3 months went on to the “virtual”list which basically meant scans and eye test every 6 months. I’ve not got 20/20 vision in that eye and have subsequently been discharged by a second hospital.
The bad news is I developed occular melanoma in my left eye last year. After successful treatment for the tumour I’m now undergoing the same injections in that eye for retinopathy caused by the radiation.
Perhaps a better reaction next time would be to ask the consultant what led her to believe there was an improvement, and to ask to see the scans rather than storming out.
By the way I was treated in UHW (the Heath) and the Royal Gwent.
My injections are still every six weeks and have been since the initial starter of three doses.I would have asked about what the scan(s) showed but none were done yesterday. Her findings and conclusion were all based purely on my reading the chart with rows of letters, that was literally the only test done yesterday, no eye exam, no photographic scans, nothing.
I know in myself the amount of letters I can see and be able to read is gradually declining.
In the last year I've had no injections or any other kind of treatment on my left eye. When, with my left eye I'm shown just one letter, even after starting at it for what feels like an age, I still can't make out the letter.
Because I'm in continuous excruciating spinal pain from leaving my house, ambulance transport to the hospital and returning, leaves in enormous agony for around four or five days after. I did ask a previous opthalmologist what would happen if I stopped the injections, and explained all the pain elsewhere... He told me very bluntly that the fluid injected into my right eye only lasts roughly 4-6 weeks, so if I chose to stop the injections, I would definitely end up with the extremely low vision in both eyes within a matter if a few months.
Oh bless you what a horrid situation to be in. Something similar happened to me some years ago but I too stood up for myself and it was changed.
Had you seen this ophthalmologist before?
Sometimes over injecting when there has been a good response can have a negative affect this I do know but it does depend on the patient as to when this should stop. Did they want to discharge you? Or just skip an injection and see what happened ?
This was the first time I'd seen this opthalmologist. Although I was told they have about 20 opthalmologists working there, I've been seeing the same four, alternating on my appointments. One of the nurses asked me if I wanted to continue attending, I agreed, so she said I could skip this injection and continue them in six weeks when my next app is due.
Yes that sounds reasonable if it were Eylea you were injected with then that has the ability to last for up to 8 weeks for some. It looks like your eyes may not need injections each time you go as you have responded well so far. When I go each month I am always injected regardless of the result as we have tried a longer time frame and it did not work for me
Mine is Lucentis. I guess I would have handled it better had previous opthalmologists actually made comments on how well my right eye is responding, but whenever I've asked, I've just repeatedly been told "it's stable".
Another thing, why the opthalmologist told me about stopping treatment altogether, yet ;-
a) the only two options I'm offered to have the injections is either with my head back or laying flat on a hospital bed - neither of which my spinal damage allows me to do, so I end up bed ridden 4+ days after every injection.. I put up with the excruciating pain to try and save my remaining sight
b) so far, not one specialist has even hinted at the possibility of stopping the injections.
- They wanted to keep me on a four weekly injection even after the load dose. They only agreed to change it to every six weeks when I said I was seriously in two minds about stopping the injections due to the severe spinal pain I'm in for days after each injection. So from what they've all been saying, there's no hint or indication of any kind that the six weekly I'm currently on would be changed too three monthly.
Probably why it came as such a shock hearing this woman I've never met before suddenly announce all current and future injections to save my sight would be stopped.
What I don't understand at all is how severe scarring across the central retina can magically heal itself when injections on that eye were stopped a year ago ..
I don't trust people easily so what she said about my vision really doesn't instill a whole lot of confidence, faith or trust in her decision.
I have wet AMD in both eyes. The injections in my right eye are in the hopes of either stabilising or slightly improving the condition. For the past several months the injections have just managed to stabilise. Sadly after the first three injections in my left eye, it didn't respond in any way at all, so by the August, six months after the injections started, I was told that nothing more could be done for my left eye as the scarring across the central vision was beyond help.
Your treatment for AMD does not sound like best practice to me. My treatment at the NHS Western Eye Hospital in London (WEH) is very thorough on each visit as you can read in my earlier post:
As you'll see, at each visit, in addition to the eye pressure and VA chart test, I have an OCT scan and an eye examination by a doctor and then we look at the scans ands discuss the need or otherwise for an injection. If you only have an eye chart test, the procedure at your hospital would appear to be less than ideal. Perhaps you should ask why they don't follow the same procedure as the WEH.
As you find it hard to identify the top (largest) letter on a Snellen Chart, it is not an accurate way to determine your central visual acuity (VA). Without realising it you may be depending on your peripheral vision to assist identification. In this way your VA could appear to be better than it really is. Do they ask you to sit closer to the chart than the standard six metres? At WEH they go as close as one metre if necessary.
My experience has been that injections have been discontinued when the fluid seen on the OCT scans has been reduced and shows no further improvement. The appointment interval is then extended but I monitor my eye condition regularly and attend the clinic if I detect any changes. Nothing is ever determined solely by the VA results.
Hi Paul,Normally I have the chart with all the letters on (Amsler? Snellen?). They tell me where to sit, I'm never given an option to move forward so have often found myself leaning forward. I did ask once if I could move closer but was told very abruptly "No, this is the distance you have to be at".
I have to ask if they'll do my left eye first as I have so much scarring across the central vision, I know if they do my right eye first, I may be tempted to try and read letters with my left distorted vision just from memory, which wouldn't give them a correct result.
After that chart test, I then go for the scans and puff of air in my eyes, then I get to see the opthalmologist, who discusses the test results and if another injection that day is needed.
So far, after the load doses, i've had to have an injection every six weeks since March last year. They stopped injecting my left eye in August as they said it wasn't stabilising, improving or showing any positive changes at all to the injections (I can't see anything on the letters chart at all, with or without glasses with my left eye now it's deteriorated that much).
The strange thing is, I didn't even get to have the OCT scan on my recent visit. I did the letters chart, I thought it was a new nurse taking me in for the OCT scan, but it turned out to be the opthalmologist.. I have no idea why the OCT scan wasn't done first before she spoke with me, or why she spoke with me there and not in her office.
To date, not one of the various opthalmologists I've seen at the eye hospital in Amman Valley, Carmarthenshire have said anything about stopping the injection in my right eye any time soon, so why this time and on so little information and only one result from the reading chart?
Because I have multiple physical disabilities (excluding my lack of sight), my spinal discs are damaged. The one of two positions I have to be in for the injection leaves my spine in excruciating pain for days after.. but that's by the by... I spoke with an opthalmologist a few months ago about this as the spinal pain was too much to handle any more. I asked two questions..
1) How long after an injection does it take for the stuff injected to wear off before my sight starts to be affected" .. he said 1 - 2 months.
2) ... I received the same answer, but with a very strong recommendation not to stop, when I asked "Due to the physical pain each visit causes me, I'm seriously contemplating stopping the injections."
So it's more than a little disconcerting when on all six week visits they seem vague as to whether the condition has yet stabilised or not, and this woman whom I'd never seen before, without even doing an OCT scan decides she wants to indefinitely stop all further injections on my eye!
Given how quickly my remaining sight will deteriorate, which they then can't repair if they later restart the injections, my thoughts were all over the place.
A day or two later I did receive another appointment for the eye hospital, hopefully to see a different opthalmologist. And while I will remain pleasant and diplomatic, I will be armed with a whole lot of questions.
I did email the Macular Society regarding that visit, they suggested attending the next visit in the hopes of seeing a different specialist and trying to clear up both what happened as well as my own concerns before I contact PALS about this. The appointment is August 10th, so fingers crossed I'll know more then.
In the absence of an OCT scan I fail to understand how they can give any opinion as to whether the condition of your right eye is stable, getting worse or getting better as a result of the last injection. A VA result from the eye chart (it's a Snellen Chart) is not that accurate as it depends, for example, on how hard you try to read the letters. Do you wear glasses? If so, do they ask you to try to read more letters using a pinhole?
When you enter the room for the chart test with both eyes open, it must be hard not to see what the top letter is, in which case testing your left eye at 6 metres is fairly pointless!
Try this test. Print the attached image at A4 size. It should be about 88mm high, which is the height of the top letter on the Snellen Chart. Alternatively enlarge it to that size on a computer screen. See at what distance you can recognise it with your left eye and let me know the result. I can then give you some advice about what you might say at your next appointment.
Hi Paul,Yes, both eyes are open when I go in the room. They have a chair one end (which they have to move as I'm in a wheelchair), the chart is the other end. With the room being so narrow, it takes me some time to be able to turn my wheelchair around so as to face the chart, without my chair catching on surrounding objects.
I'm always asked to wear the glasses I have for distances, and yes I get the plastic black shield to cover one eye at a time, then the one with the pinholes.
I've asked multiple times why they test my sight at distances when nearly everything I do on a daily basis is much closer to me.. I wouldn't be at 6m with my distance glasses on to read cooking instructions or see where to put the dial on a washing machine or microwave, but I've never been given an answer, it just gets ignored.
I had to ask them to test my 'central vision loss' eye first, otherwise I remember the letters. Its not easy to turn off the memory and go by sight alone.
I also get ignored when I ask why the order of the letters aren't mixed up between testing the left and right sight as, I know for me, I tend to remember the letters.
Hi Kohai. I have myopic macular degeneration. I'm in Glasgow Scotland and feel so frustrated too. I was seeing a section of bad waviness with flickering in my right eye back in 2016 I was 56. My optician sent me to Gartnavel eye hospital. The ophthalmic consultant told me my eyes were exactly what would be expected for my age and prescription and sent me away. A year later a full blind section had formed in exactly that area of the eye. The eye hospital intervened this time with lucentis injections. The consultant told me my other eye was 'acting funny'. This comment always stayed in my brain but the eye hospital changed it and said the other eye was fine. Over the years the central vision has decreased only seeing fingers now with an injection being given here and there but nothing since 2018. I referred myself as an emergency again in July 2020 as I had noticed the same waviness and flickering in the left eye since the May. The ophthalmic consultant did a dye test and told me that as there was no fluid behind the eye he could do nothing. The following September a blind section appeared exactly where the waviness was. A course of eyelea was given. This spot is quite small so still getting by but I don't understand why the patient is not listened to. If a person with really high myopia attends with waviness and flickering and wants to try an injection even although no fluid is showing with tests surely it is worth a try. The patient has no voice and it is precious eyesight we are talking about here so serious. Surely what we are seeing should be taken into account. I feel for you Kohai.
Exactly, it doesn't feel like we're listened too, or we're given what sounds and feels like a generic answer and expected to just accept it without further question. Its our sight at risk and not something I for one feel they should gamble with like this.
After the last appointment went so badly, another was sent to me for Wednesday next week. Fingers crossed I see a different opthalmologist and one who is prepared to give me answers or some explanation about why injections would be stopped without a scan first. They can't know what's properly/fully going on in the eyes just by reading an eye chart of letters.
I'll hear what they have to say next week then talk to someone at PALS when I get home. My physical health has been made worse over the past decade from medical professionals either not listening or their egos clashing with eachother at my cost, I can't risk them being negligent with my sight, none of us can.
As an update... I had the appointment Wednesday but it didn't go as expected. Everyone was suspiciously nice, even the receptionist asked me if I wanted coffee, while there's a coffee machine in the entrance area.Because I don't spend much time around people, I get overly anxious around people I don't know, and I ramble.. on previous visits many of the nurses, I feel, have disliked it, even though I've said it's nerves, so for everyone to be so nice, it was like they knew a complaint was possible.
After I red the letters chart, the nurse sat chatting with me while waiting for the other nurses to come back from lunch. She asked if I was nervous, I mentioned about questions for the opthalmologist, it was only then I was told that the previous opthalmologist who messed up on my last visit only happened to be the 'Clinic Manager' of all people!
I spoke with a different opthalmologist, she said "while she didn't have any answers regarding my previous appointment, the scan that day (last Wednesday) did show I have both scarring and bubbles of fluid in my right eye so do still need injections to continue".
I'm guessing that due to professionalism, the ophthalmologist could hardly comment on the actions of the previous opthalmologist, or the fact it was the Clinic Manager, so I got no answers at all on that screwed up appointment.
I did say to the specialist Wednesday "I rarely give medical professionals a second chance let alone a third to mess with my health, but so far someone has entered data into my opticians file saying I've had a detected retina plus surgery, when I haven't.. then the Clinic Manager screws up, I can't afford people playing russian roulette with my eye sight".
While she did agree, she suggested I talk with the ECDL office, I told her that I'd spoken to him the day before and he suggested I speak with the opthalmologist, so i'm going in circles and not likely to get any answers unless I put in a complaint. That said, Wednesday's opthalmologist did say I can refuse to see the Clinic Manager, she only works on a Thursday so if I get an appointment for a Thursday, I can ring in advance and get a different day.
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