Friday, 27 September 2013

son of stickler - cataract op

On Thursday 5 September I went in about an hour early - before half eleven - for them to redo the eye measurement test, again on the fancier machine. I'm not sure now if it was because they wanted to try to get a better reading or if it was because they thought the eye pressure had been significantly higher than they'd have liked and they wanted to see if it had come down. Either way, it was still high, I heard later.

I went up to the unit where they do the surgery for half twelve. I had the logging in process with the nurse, with measurements and questions and drops, and then waited with the others for the doctor to come on at half one and do the preliminary conversations and assessments with us all, after which they would decide the order we would be done in (I remembered from the last time that this was the way they did it, so wasn't expecting my op to be anytime near half twelve - we'd all have been called for that time). I sat in the corner by the window, it's a great waiting room, up there on the eighth floor of the north wing, looking down onto County Hall and the river; it was a nice day, and people were out on the hospital grass.

When the doctor came, she explained what I said above re the assessments and ordering. The person I thought of when I saw her first was Phoebe from church, though she didn't look that much like her in reality; I described her at work as 'the schoolgirl who operated on me'; she did look very young, but I didn't mind that; she was a registrar, her name was Anna (I couldn't find her on the website after, or the staff board in the hospital, I guess because she's not part of the permanent staff), and I'd guess very loosely that she had a south-east Asian background, though her accent made me think of Germany. Unless I see her name on a related document I'll never know any more about her, probably.

When I went in she had a look in my eye. She asked me if I'd had iritis. I said I didn't know what that was, but that I had had retinal detachment surgery. That's important for me to know, she said, which confirmed to me the importance of not assuming that they've had time to read your file in detail rather than just having picked it up when you came into the room. So I said also that the detachment has been the result of me having Stickler's syndrome. She mostly then spent the time telling me that because of the previous surgery and the Stickler's there was a much-increased chance of complications, or lack of success, during or after the operation; it was more complicated for me, but they'd try to sort out anything that arose at the time, 'on the table'; I was fine with that, as usual; operations have risks, and even if a worst-case scenario is blindness, well, that's the definite scenario without an op. (A couple of people in the process - I think she was one of them - asked me if I'd had the other eye done yet, which wasn't very encouraging; perhaps non-post-op cataracts usually come in pairs; or perhaps Sticker's ones usually do.)

I came out thinking I'd surely be on first or last, and sure enough when she'd seen everyone and came out - about half two - to tell us the running order - emphasising that the order was for no reason other than medical reasons - I was on last (out of five or six). I went to the desk and told them I was on last, so could I go and eat something; they said fine, so I took off my gown, retrieved my rucksack from the locker, and off I went downstairs to shepherd's hall and had a meal, then went out and rang Bethan. I didn't rush, as there were four or five people to be operated on before me, but when I came back up a nurse said she'd been looking for me to give me a tablet to reduce the pressure in the eye before the op. When I went back into the waiting area there were two people out already having had their surgery, and a third came out soon after that; they were really rattling through them.

I waited as the others went and came. A young couple were waiting, and a different surgeon came out to tell them the op on the child had gone very well, and that she was still sleeping but they'd take them in so they'd be there when she woke up. I would hear - but not see - that surgeon later.

I waited, feeling too full and sorry that I'd had a twix with my coffee after the meal since I hadn't expected the op to be coming so soon and I was afraid I might be sick if I was nervous (no reason to think I would do that, of course). I was prepared and taken to the entry room to the theatre, but was taken away again because I'd been called too early and they were still stitching up the person before (I think they may all have been women, in fact). Then taken back to the entry room. I don't remember during which of the entry waiting periods I heard a child howling - from what I took to be the adjacent operating theatre - and said to the nurse, that'll be me; it so won't be, she said. I don't know if it was the child mentioned earlier; I thought at the time it was more likely another one. The second time I was taken into the entry room I asked what the time was; it was twenty to five.

When I was back in the waiting area I asked someone there what the time was; it was quarter past five. So although it had been complicated, it hadn't taken longer, or much longer, than a routine one. So it was much shorter than the retina op, and I'd say it was less gruelling. I'd say I experienced more pain during it, though; either this is because, happily, the memory of pain fades pretty effectively, or because the surgery was less major/invasive and so there was less anaesthetic knocking about. There was more sharp pain and less - none, really - of the pulling/tugging/manipulating which is my major memory of the retina surgery. I told them near the start that I was feeling pain, and they gave me a bit more anaesthetic. I didn't need to tell them, because I was doing a lot of toe wiggling, making little noises and making my body very tense, all of which they told me I had to try not to do, because it was making me move but also because it was increasing the pressure in the eye which was already making it difficult. When I say 'they', it was mostly the other surgeon who was telling me this. I don't think any of this was said to me directly, but rather my registrar surgeon Anna talking to the other, obviously more senior, surgeon (who I"m pretty sure was Luis Amaya, who I see has one of his specialities as paediatric opthalmology; she had put me on last obviously because I was more potentially complicated, but also because she had asked him if he would stay to be on hand after he'd done his ops. He stayed, and she talked to him throughout, but at no point did I get any sense that he was intervening or taking over; on the contrary, his primary contribution, apart from telling me to relax, was to assure her that she was doing very well and that her decisions were the right ones. She checked with him the strength of the lens which the doctor on Tuesday had recommended putting in, I think because she wasn't sure it was right or perhaps that she'd understood it right, but he confirmed it.

Before the op I'd avoided doing too much online research, and was happy with just looking at this page on the NHS website, which contained a nice animation re the procedure (I definitely wanted to avoid seeing any real-life footage). I'm pretty sure the procedure as outlined there is what I had. I heard the sound of the thing they used to break up the 'cataract' (though in reality that seems to mean the whole actual lens, since they insert a whole new lens in its place), which is an extraordinary thought that they can break it up with sound.

The most unnerving thing - and I really don't remember this from before - is that for much longer I could see relatively clearly out of my eye, so I could see them approaching with various implements. I really didn't like that at all. On one of the occasions on which I made a noise they asked if whatever they were doing was causing discomfort, and I said no, but I can really see you. I thought I should say this, in case I wasn't meant to be able to see them so well, but she was quite laid back about it and said that that was normal in this kind of procedure.

When they were finished and getting me ready to get off the table, one of the nurses expressed surprise at how drenched in sweat I was; were you really nervous, she said; yes, I said.

I wasn't the only one, as it turned out. Anna said as I lay there after we'd finished that she'd been very nervous about doing it, but that it had gone really well, it couldn't have gone better. You don't mind hearing your surgeon saying they're nervous, as long as it's after the op and the op has been successful; not what you want to hear beforehand. She came into the waiting room later to tell me again that it had gone well; perhaps because they thought I had been such an anxious patient that I needed further reassurance.

I phoned Bethan, who had already rung the hospital and so was on a bus on the way, and I got a cup of tea and a biscuit. After they arrived I was discharged with some post-op eye drops - Maxitrol, one drop four times a day for a fortnight then twice a day for another fortnight - and three days worth of tablets to keep the pressure down in the eye. I was told to take it easy for the next day or so, and not too much bending, but that was it; a very different recovery process from the retina.

As I said to people later, if the next day had been one of my working days, and it had been a day of meetings rather than screenwork, I could have gone in; I felt a bit washed out, that was all; and I didn't feel any particular pain in the days after that led me to taking any more paracetamol than I would normally have done in any given week. I slept sitting up for a couple of nights, although they hadn't asked me to do that and it was more for myself, wary of knocking the eye knowing that I move about a lot in my sleep; they gave me an eye shield to wear at night, which I am still wearing (again, I don't suppose most people would wear it this long), but won't for much longer.

The eye has felt fine, just feeling things which I remember from last time and so which I'm not worried about feeling this time - sometimes a bit watery (hardly now), sometimes a bit gritty/stingy (less so now), and sometimes a bit light sensitive (getting back to my usual level of light sensitivity now, I think).

Saturday, 7 September 2013

son of stickler - from post-retina op discharge to eve of cataract op day

(I should say at the outset, as per similar post-op emails in early 2010, that I'm typing this mostly without looking at the computer, which is my pre-emptive excuse for the typos.) So, I had retinal detachment surgery in January 2010, due in large part to me having something genetic called Stickler's syndrome, previously undiagnosed. I knew that in due course a post-operative catarct would form in that, right eye, which I would need to get removed.

At the end of spring I went to get my eyes tested, primarily because the left eye was obviously feeling the efects of three years working on its own, more or less, and I was having more difficulty reading, espeically noticeable when precenting or reading choir music. I had decided to change opticians and went to the Institute of Ophthalmology, which is walking distance from our house and which the others had been to recently ( I found out later, soring through paperwork, that I had actually had an eye test there years ago, I guess before even I worked at Scripture Union, which had the opticians very near which i went to then and had still been going to). I understood that you had to wait until the cataract was well in before you should think about getting it removed, and I knew it was coming on well. I hadn't realised until I did the eye test that it had quite gone so far, as I ouldn't even see the letter at the top of the chart, and I remembered how much of the chart I could read when I had my eyes tested for new glasses after the operation and aftermath were all over. The opticians, fair enough, wouldn't give me a new prescription for my left eye as there was no point in doing so, since they couldn't give my right eye a proper test, and I'd need new glasses again after the cataract op which they thought I was going to need. They also had a good look at my left eye, and got someone in to have a second look, as there was patch at the veryedge of theri sight of my retina which they weren't sure about. that I have an ophthalmogical referral to look at my left retina and to determine whether there should be cataract surgery on the right eye.

The process is that they write a letter to my GP with the outcome of the eye test and their recommendation. The GP then refers me to the hospital for an assessment. In fact Southwark have asytem set up, to speed things up, whereby some opticians have someone who is accredited to do those appointments, which means you can get an appointment faster than going through the hospital. As it turned out, because of my prior surgery the chosen optician wasn't prepared to do the test, so I had to get a hospital appointment anyway. They offered me one whil I was on holiday, so I had it put back a week to the day after we got back from holiday - this Tuesday.

I didn't mind the wait. It did make me a bit frustrated with myself that I hadn't gone for an eye tst sooner, since it left me with the left eye reading problem for longer than was necessary when I getthe impression I could have gone back with the cataract sooner.

What I wasn't clear on, though, was where I now was in the process - that is whether this Tuesday's appointment was a pre-pre-op appointment, when they would look at my eye and say yes, you do need a cataract op, we'll get you into the system and call you back for a pre-op appointment, or whether this was a pre-op appontment when they would confirm I needed an op and get the bakk rolling there and then. It did turn out to be a pre-op appointmet of the latter kind.

So on Tuesday I trod the familiar corridors of the St Thomas's eye department, did various measurements, details and drops with the nurse, then saw Prof Zuberbuhler, who took a look at the right eye and offered me a cataract op. He also looked at the left eye and said it was fine, which was reassuring. He gave me all the info about the risks and possibilities of it being unsuccessful, as they have to do before they get you to sign the consent form, and then I signed the consent form (the worst outcome he said was one in five hundred chance I'd lose the sight in the eye, but the alternative is not having surgery and not seeing out of the eye to any effect anyway). As with the retinal surgery, I had drops in my eyes when I was given th form, so i couldn't actually read the document which I was signing, which I still think is funny.

I did some more preparatory tests and measurements after that with a nurse. They had difficulty doing one of the biometric tests, I think because the cataract was so bad. So while they waited for someone to be free to redo the test for me on another machine, they sent me to the reception desk to get a date for the op; they reckoned the waiting time was usualy four or five weeks. When I saw the guy, he offered me the 5th of September. I said 'what?'; I assumed he meant October and had made a mistake. He loooked at me puzzled. You mean three days from now, I said. Two days, he said; Thursday. Oh, I said; I took a moment to think about it, and couldn't think why not, so I said okay. Then I had my tests redone on the other machine by a nurse practitioner (I needed anaesthetic drops in my eye for this,a s it obviously involved direct contact with my eyeball), though she still seemed to be having some trouble.

The doctor had talked about my new lens. He had said they could give me a lens that would mean I only needed glasses for reading, but they didn't like to make the eyes more of a difference than 3 otherwise they would find it very hard to work together. (In my 2010 test the left was minus 6 and the right minus 3.75; this May's test said right was minus 4, though I don't undestand how that was worked out.) So he told me which minus number he'd aim to make the new lens, and said that when it came to the left one they would then leapfrog that lens accordingly to being that much better than the right eye. The nurse practitioner mentioned a new lens as well and I asked her about it. I had thought that they removed the cataract f rom the lens and so restored the lens to more or less what it had been before (hence my thinking of it as 'cataract removal surgery); she said lots of people make that mistake, but infact what they do is take the whole lens out and put in a new artificial lens. So it is less cataract removal surgery than lens replacement surgery. I guess it did used to be more as I had imagined it in 'olden days'. This I guess whas why the doctor on Tueay - and the surgeon on Thursday, when it came to it - was at pains to emphasise that I would still need glasses adn that I would not be getting perfect distance vision. I hadn't expected any change in my distance vision, but I guess some people (who are better informed than me about the actual process) do expect that.

Bethan asked if the Sticklers had come up with the doctor, and I said it hadn't, but I assumed he was a ware of it, since that and all the retinal detachment stuff was isn the folder of notes, I presumed, since that's where I'd had it done. She said not to assume they had picked that up, and to be sure to mention it on Thursday.

I went from the hospital to work after lunch, then to Morris Folk Choir in the evening; I went into work onWednesday morning and home as usual at lunchtime; then handed cherub over to Bethan at her work and went to my other choir, the London Gallery Quire in the evening. Just before I went out to meet Bethan I got a call from the hospital asking me to come in a bit earlier on Thursday in order to repeat some of the biometry (I guessed, correctly, that it was that final test).

It seemed a bit surreal that it was all happening so fast, especialy since I hadn't even been certain that Tuesday's appointment was a 'pre-op' one. But I didn't mind at all; less time to think about it. With my retinal surgery, of course, I toddled along on the Monday after New Year to eye a&e and was under the knife on the Thursday, I think. So, two quick ones.

The day of the op will be covered in a separate post.