Unlucky & lucky, feels like I've been on a roller coaster with no brakes, I'm male & 56 years old. Went to the optician for a routine eye check, with an optimax machine, i.e. takes a photo of the back of the eye, he saw something he didn't like and referred me to the local emergency eye clinic at the Royal Stoke Hospital, they phoned 2 days later and asked me to go in straight away, they immediately diagnosed a melanoma and referred me to Royal Liverpool hospital, was seen within 1 week and was told although it was a small melanoma it was very close to the optic nerve and the best course would be Tantalum makers behind the eye and Proton beam treatment. Operation was scheduled for 7 days later and here I am 2 days after the op with my proton beam treatment scheduled for the end of April. So lucky they found it, cannot fault how incredibly fast things have moved and how considerate and caring all the people I have met have been. Just unlucky it found me.
It seems difficult to find info on what to expect from the eye after the operation, how it will look? what can you expect it to be like? so that is why I am posting this, maybe it will help.
The op was worrying but was worse for my wife as I was asleep. The whole team in the eye clinic, day ward, anaesthetists operating staff, doctors and Professor doing the operation were fabulous. Straight after op, big eye patch just felt very uncomfortable, a couple of painkillers. Slept sitting upright with loads of pillows.
Day after op took off patch & it doesn't look too bad, just like my eye is swollen shut, taking pain killers, alternating through the day between ibuprofen and paracetamol, so no pain just discomfort, if I try to open my eye it waters considerably and becomes more uncomfortable. Trying to be careful to only dab the tears away not wipe so the eyelid doesn't become sore. It feels like I have some grit or eyelashes inside my eye and eye lids. so I tend to just keep it closed. Still sleeping upright.
Day 2 post op where I am now. I can open the eye about 1 mm, it looks like I've got a lazy eye that is very swollen and very bloodshot, totally blurred vision but that's an improvement from the day before, it doesn't tear up quite as much, there is a slight discolouration of the tears that I dab away. I work self employed so was aiming to get back to work as soon as possible but not going to happen yet as I do need some sight for my job.
Can't say if there is double vision as I cannot really see out of my right eye and it wont focus. Still sleeping upright.
Day 3 post op. Swelling has definitely reduced but I still can't open the eye more than 1 or 2 mm, it was really matted up first thing in the morning but was easy to clean with cooled boiled water & cotton wool pads as suggested at the hospital, I can move my eye up and down a bit, but it hurts to try left & right so that's out. The hardest thing seems to be not being able to blink & clear the film that seems to be like tears in my eye, so I cannot focus that eye. That seems to give me a bit of a headache. If I don't take the painkillers it feels quite sore so I'm still taking them just not taking them as often. Starting to feel the eye drops going into my eye more now as couldn't really feel them before.
Day 4 post op. Eyelids still very stuck together in the morning, woke up to find I had ended up sleeping flat, started off propped up. Usual clean up with cool boiled water. Swelling going but eye focus no better, still got tears in the eye and the irritation under the eyelid is more pronounced. Interestingly when I put the drops in they make the irritation worse for a while but I can taste the drops in the back of my throat after a short while so presume this means the swelling has reduced inside the eye socket to open the tubes at the back of my eye, I can open the eye to about half its normal opening. Went & did a small about of work today & got told off by my wife for it, but just can't sit around all day, couldn't see much difference between watching tele and watching work.
Day 5 post op. Swelling definitely reduced, Eyelids not as matted together this morning, irritation under the eyelids is still there but greatly reduced, eye opening about 70%, eyeball looks quite bloodshot as it can be seen better now, would look good on a Dracula film. Eye feels like it is focusing but the film or tears that seems to be in the eye causes it to still be blurred so cannot clear the eye, but it feels better because it is more open. I can definitely feel my eye more today but that also makes me more aware it is sore.
Day 6 post op. Definite sore eye, bloodshot, can look up & down ok but not sideways without discomfort. still matted up in the morning but it does seem that I can keep the eye open for longer and it isn't tearing up it just feels swollen inside. the only obvious swelling on the outside is on the top lid by my nose but I still cannot open the eye fully. No pain killers for my eye just for headache across the front of my forehead, think it comes from trying to focus my eye. Find it useful to attach an eye patch on the front of my glasses with elastic, it rests my eye from trying to focus even though it is open.
Day 7 post op. pretty much same as day 6 but no painkillers for headache today. Have also tried driving as surgeon said it would be ok, not really a problem, I generally close my bad eye when on normal roads so it doesn't annoy me, only need to open it for manoeuvring when I can see enough, so ok. Noticed, as I can now pull back the eyelids the small red/ brown marks the surgeon said would be there on my eyeball under the top and bottom lids, they seem to be attached to my eye probably some kind of scabs as they move with my eye. Interestingly that is where the discomfort of the grit feeling in my eye is coming from which makes more sense. It still feels that my eye is swollen or too big in the socket
Day 8 post op. not matted up this morning, opened straight away with my good eye, great. Seems to focus a bit better but not clear yet, still gets tired and cannot open it fully. Still bloodshot. Not getting the gritty tickling in the eye from previous days today so maybe a turning point. It does still feel uncomfortable to look left & right but more like the eye is the wrong shape for the socket. I would say almost there.
Day 9. I’ve now found out the small red/brown dots on my eyeball are actually sutures or stitches (should have guessed that) but it wasn’t mentioned before, they should be starting to dissolve soon, so it does make sense that is where the gritty feeling is from. Eye is still not clear blurred vision seems to be getting a little better each day but the change is quite small. Swelling around the eye has virtually gone but I cannot fully open the eye.
Day 13. Very slow tiny improvements over the last few days, have checked with the hospital and they say I can use comfort eye drops from the optician in between the drops they originally gave me to try and make the eye more comfortable. Apparently the stitches stop the eyelid wiping the eye properly which results in dry areas.
Day 20. Looking up & down is not a problem. I have to be careful not to look suddenly to the left or right as that is quite uncomfortable (did it by mistake when not thinking). Eye is almost totally open and definitely less bloodshot, feels more comfortable but not totally right. 2 of the stitches appear to have dissolved now but the other 2 can still be felt. There seems to be times now that the eye is almost seeing clear (not blurred) but then it goes back to being blurry. I guess until all the stitches have gone that is how it will be.
By the proton beam treatment it all appears to have settled down well.
In comparison to the operation the Proton Beam treatment was much easier. I was advised to practice staring at a small spot for 30 seconds with my good eye shut or covered over, it does take a bit of practice to not look away. That is all you have to do for the proton beam treatment, you don't feel anything, just stare at a pin point of light. You have a mask made of your face with a hole cut in for your eye to be treated. You sit in a chair, like a dentists chair with the mask on, eyelids are taped open (sounds far worse than it is) so you don't blink then its 30 seconds of staring at a pin light. They put a gauze pad covering over your eye afterwards which you keep on for a few hours as you wouldn't feel if you got anything in your eye due to the eyedrops. The same thing for 5 days in a row. Thats it.
One year on and my eye does sometimes like to play up by weeping, tearing up and being matted some mornings. My eyesite hasn't really changed although sometimes that eye seems blurry for short periods of time.
I'm 2 years 1 month on from the treatment and the eye hospital are happy that the proton beam has been successful, liver scans are clear so that’s all good.
Being honest I have lost some vision in my eye, ( I was warned it could/probably would happen) for me the lower vision has gone grey/black so if I look straight forward I have just about no vision below the horizontal. Weirdly enough the blank area moves with my eye so if I look down it disappears, if I look up it blocks my vision in front. Actual eyesight is still good.
It did appear to happen over a short period of time probably 2/3 weeks at the beginning of March, nearly 2 years on. I just thought it was my eye playing up as it often did, but a quick visit to the eye hospital has confirmed it isn't the cancer making a return it is the proton beam treatment damaging my optic nerve, a side effect I was warned about as my melanoma is so close to the optic nerve.
It does annoy me but I would rather deal with the inconvenience rather than the melanoma, so all good.
