So you know we with aniridia just love to keep everyone on their toes and love to be unique and confuse poor medical staff?! Well here’s my latest adventure story …
I was in the middle of a busy week camping and looking after 10-14 year old girls – late on Thursday evening, I went to settle my group of girls down for the night and noticed I was starting to have eye pain in my right eye (my ‘good’ eye). The pains were still there when I went to the de-briefing session and then they started getting worse when I went to meet with the other leaders and get hot choc and a cake before bed.
The pains were achey pains, more like glaucoma/pressure pains than corneal/dry-eye pains. The pains only seemed to be in one part of my eye though, which made me think maybe I’d got a scratched cornea. Occassionally I got shooting pains in my eye, these were the pains that worried me the most, they seemed random and nothing like I’d ever felt before. I was really scared that my retina was possibly detaching, as that happened to my left eye when I was around 17.
I told one of my friends that my eye was hurting and she asked me what I usually did when it hurt – the answer – “go to A&E” – I then promptly burst into tears – she’d only just come back from taking a camper to A&E with a suspected broken toe, plus it was late at night by now. I just felt like a total burden. Two of my friends convinced me however that going to A&E would be a good idea – “better to check it out and it be nothing serious, than to worry about it but do nothing and it does turn out to be serious”.
So we bundled into the car (me snuggled up on the back seat with my hot water bottle as a pillow) and drove the 1 and a half hour journey to my local hospital (we thought it best to go to that one where the doctors would have access to my notes). I tried to get some sleep on the way but was too worried and in pain.
We arrived at the hospital around 1am and had to wait until 5am to be seen – apparently there were a lot of trauma cases that night, and a lot of serious accidents. We tried getting some rest in the waiting room and managed to sleep for about an hour or so in total – the time really did drag.
My name was finally called and I was in the middle of giving my medical history, when the dr was called away to attend to someone having a heart attack! So more waiting …
Eventually I had my pressures checked and sure enough as I’d suspected, they were high (27ish). So the doctor gave me some diamox immediately and put lacra-loob in my eye and went to call the eye specialist on call – who as it was early morning, was fast asleep and had to be woken up!
When the doctor said he was going to give me diamox I asked him for the slow release version but he said he didn’t think they had any of that, so I made my friend go out to the waiting room and buy me chocolate, because I can’t stomach the normal kind, as it’s so bitter/chalky tasting! My friend had just got back with the chocolate when the doctor returned and announced he’d found some slow release diamox in the cupboard! so I was very happy. Me and my friend shared the chocolate and that made us both feel better and more human!
The doctor said that I was lucky because I’d come on the very night there was a doctor who knew how to take pressures! I teased him and told him he’d have to be very clever to get an accurate reading due to the nystagmus!
The eye specialist was absolutely amazing when she arrived, I couldn’t have asked for a better doctor, straight away she started asking all the right questions, and even said she knew that my pressure measurements might not be totally accurate due to the thicker corneas. I was really impressed with her knowledge of aniridia!
So she took my pressures again, this time with an Icare tonometer, and the readings were 16/14. so the pressures had come down nicely, thanks mainly to the diamox. She said the surface of my eye looked good, not too rough – although she wasn’t totally sure because she had nothing to compare it with, having not seen me before and no pictures etc. She said however that my eye looked very inflammed over the site of my glaucoma shunts, especially the most recently placed one (which was in 2006). She discovered the shooting pains I’d been having, were actually pains when I was moving my eye or my eye moved, it really hurt to look down. Because of my nystagmus I can’t control my eye movement so whenever my eye moved I felt the pains.
My vision had reduced too. When I saw the first doctor, I couldn’t even count fingers! (my vision is usually around 1/60). When the eye specialist came she tested my vision too, but turned me around so I faced a different way and I was able to see ‘vague finger counting’, which was good news.
The eye specialist was pretty mystified as to what had caused the inflammation. She said she would give me tablets to reduce the inflammation – she went away to get then, came back and said “these are ibprofen” I started to say “I can’t …” and she finished off for me “take them because of your kidney problems, of course, silly me!” So she had to think of a plan B – and gave me Pred Forte drops to take every 2 hours but said if there was any kind of infection in my eye, these were the worse possible drops she could give me! She also decided that as I don’t tolerate diamox well that it would be better to put me on another drop, so she prescribed Saflutan – that meant alongside the drops I was currently taking, I’d be on all 4 different glaucoma busting agents (4/4).
So finally I was allowed to go, and we arrived back at the camp site just in time for breakfast. I slept from breakfast to just after lunch!
Then the following day (Saturday) I went back to the hospital for a check-up and the pressures had gone right down to … 9!! Plus the inflammation had gone down a bit too, but not completely and the eye generally looked a lot better (a lot less angry as the consultant put it).
So thankfully no trip to London to the specialist eye hospital needed just yet. I have to carry on taking the drops and be seen at the local eye unit by my own consultant in 2-3 weeks time. The eye specialist reckons the high pressures caused the inflammation. She said she’d been up all night worrying that she’d done the right thing and hadn’t missed an infection.
I definitely mean to write a letter to the hospital saying how good I thought the eye specialist was. I’ve obviously seen a lot of doctors over the years, and she is definitely one of the best I’ve seen. I instantly knew she knew what she was talking about and I could trust her, just by the questions she was asking. Definitely one of the best, if not the best A&E experience I’ve had. She was so good that some of her questions caught me off guard, like “You were on diamox back in November, why was it stopped?” and then when I said I couldn’t remember she asked if I tolerated diamox okay.