What?!?!?!?!?
What on earth is possibly positive about finding out that I've been given a disease I didn't ever have before that coul lead to amputated limbs or even death????????
And would never have had, if I hadn't been stupid enough not to walk out of Certain Surgeon and go home?
Actually, I don't believe I do have Cushing's disease, proper, nor Cushing's syndrome from non-faulty-pituitary causes of corticosteroid overproduction; I reckon it's all a hypersensitivity reaction producing, initially, similar symptoms to normally varying levels (or asthma inhalers, or eye drops.....)
All the blood tests, plus the 24 hour urine collection test, show levels all within normal bounds.
I wish it were as bloody simple as, for example, adrenal cysts and inflated corticosteroid levels - it might be a hell of a lot easier to dosomething about it - not to mention falling within the medical profession's check-list of things they can look up and know what to do with.
I fear all they've done is spark off another hypersensitivity, which may be hard or impossible to do anything about... may find out they jsut say "sorry, you're just hypersensitive" like the neuro-ophthalmologists looking into why I'm so light sensitive. Then what do I do????? Wait to drop dead or have my limbs amputated after all? - or at least to collapse in the middle of the field with an Addison's crisis (because my system is totally confused by the hypersensitivity and trying to overcompensate for something that isn't actually wrong) that I can't just sit down and get over????
Oh, and meanwhile, the hypersensitivity to light,a nd sudden bright light, is now worse inthe gafted eye than it was before the op. Which, as the original problem for which I was referred back to the medical side of the hospital (from the contact lens centre) for the first time in years was photosensitivity, and got offered a pair of grafts, means they've actually made the intial presenting problem worse not better! Not that I suspect That Certain Surgeon either knew or cared what the initial presenting problem for which I'd come there actually was.....
Getting back on topic....
Has anyone - post grafts, or with post-graft induced glaucoma, ever noticed things you're looking at shimmering like in a heat haze??
Was at Plumpton races today, and there's a length of white railings along the boundary of the course just behind the horses when they're at the two and a half mile start.
Looking at these railings through my binoculars while waiting for the 2 and a half mile races to start, all the while uprights were sort of shimmering around, a bit like a mirage or a heat haze.
Don't know why it should be a heat haze - it was a warm sunny day, but the railings stand on ordinary green grass, not, eg. black tarmac, such as might make heat haze.
It was a bit like the shimmery haloes round street lights after dark.
anyone else ever had anyting like that?
Rosemary
Update of disaster graft saga
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rosemary johnson
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GarethB
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Re: Update of disaster graft saga
Rosemary
It was many years post graft before things would look like I was seeing through a heat haze but the only time this occured was first thing in the morning straight after getting up or sitting down after strenuous exercise.
Not had it for a few years now since being better hydrated and far fewer problems with dry eyes.
Unable to commnet on the glaucoma front.
It was many years post graft before things would look like I was seeing through a heat haze but the only time this occured was first thing in the morning straight after getting up or sitting down after strenuous exercise.
Not had it for a few years now since being better hydrated and far fewer problems with dry eyes.
Unable to commnet on the glaucoma front.
Gareth
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Barbara Davis
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Re: Update of disaster graft saga
Rosemary said:
What on earth is possibly positive about finding out that I've been given a disease I didn't ever have before that coul lead to amputated limbs or even death????????
Barbara:
I have already pointed out that, if you do have Cushings or another metabolic disorder of your steroid metabolosm, it is likely you had it for some time. Your op clearly triggered an extremely bad episode and took the problem to a whole new, much worse, level, but there is no evidence that it gave you a disease. On the other hand there were strong signs that you had already had a problem with steroids, which would probably have got silently worse.
And if you do have Cushings, or even something like it, the consequences could be disasterous unless it is diagnosed and treated. Wikipedia speaks of "higher mortality", for example: I have seen amputation resulting from Cushings and a very close escape from death from heart failure. I'm sure that what you have now is deeply distressing and difficult to live with, but believe me so is amputation and death. It is possible that discovering the seriousness of a pre-existing problem now will save you from that.
Clearly you are determined not to believe me. Ok, fair enough. I was only trying to give you something positive to hang on to, but let's drop it.
What on earth is possibly positive about finding out that I've been given a disease I didn't ever have before that coul lead to amputated limbs or even death????????
Barbara:
I have already pointed out that, if you do have Cushings or another metabolic disorder of your steroid metabolosm, it is likely you had it for some time. Your op clearly triggered an extremely bad episode and took the problem to a whole new, much worse, level, but there is no evidence that it gave you a disease. On the other hand there were strong signs that you had already had a problem with steroids, which would probably have got silently worse.
And if you do have Cushings, or even something like it, the consequences could be disasterous unless it is diagnosed and treated. Wikipedia speaks of "higher mortality", for example: I have seen amputation resulting from Cushings and a very close escape from death from heart failure. I'm sure that what you have now is deeply distressing and difficult to live with, but believe me so is amputation and death. It is possible that discovering the seriousness of a pre-existing problem now will save you from that.
Clearly you are determined not to believe me. Ok, fair enough. I was only trying to give you something positive to hang on to, but let's drop it.
Barbara
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Hilary Johnson
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Re: Update of disaster graft saga
You said:
"The current hypersensitivity has been caused by the shock reaction to the intravenous dose during the op. Without the op - or strcitly, without the gneral anaesthetic - I certainly wouldn't have been that hypersensitised."
Huh?
If your current problems are the consequence of receiving a large dose of steroids during the operation (as an anti-inflammatory), then what was the contribution of the general anaesthetic ?
Would having the operation under a local, rather than a general anaesthetic, have made any difference to either the steroid dose that you received, or to the effect that the steroids had on you?
H
"The current hypersensitivity has been caused by the shock reaction to the intravenous dose during the op. Without the op - or strcitly, without the gneral anaesthetic - I certainly wouldn't have been that hypersensitised."
Huh?
If your current problems are the consequence of receiving a large dose of steroids during the operation (as an anti-inflammatory), then what was the contribution of the general anaesthetic ?
Would having the operation under a local, rather than a general anaesthetic, have made any difference to either the steroid dose that you received, or to the effect that the steroids had on you?
H
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rosemary johnson
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Re: Update of disaster graft saga
To Gareth; it's possible it was a dry eye effect, then..... it was a warm and very dry day, and I was slurping from my water bottle a lot. Also the eye does fell regularly dry, as a result of stopping the anti-glaucoma drops. So let's hope it was a one-off as a result of adjust to not having the drops.
The odd thing iwas it was just that one set of railings, not the whole field of view, and I couldn't see anything to give a heat haze there in particular. Very odd!
To H: the steroid dose in question was given along withthe anaesthetic drugs, down a canula in the back of my right hand.
There were also steroid drops put IN my eye as an anti-inflammatory. THe quantity stuck in my eye during the op is not stated.
The ones in the back of my hand, i/v, weren't intended as an anti-inflammatory - they were given, as I gather is usual at least at that hospital, as an anti-emetic. That is, to concel out the tendency of general anaesthetics to make one want to throw up.
Apparently, the nerves that drive the "heave" reflex run along next to eye nerves, so eye ops can be particularly bad for making patients throw up after a general anasesthetic. And they particularly don't want patients who've just had a corneal transplant heaving up vioently, as the force behind the heave, as it were, can put undesirable levels of pressure on the nice new neat stitching and damage the effects of the op.
SO the anaesthetists give their patients the doses of i'v steroids as anti=emetics. Matthew explained this to me when I had that meeting with him and his colleagues.
If I'd had the op under local, there wouldn't have been any emetic effect of a general anaesthetic, so they wouldn't have needed to give me intravenous anti-emetics to counteract it.
Having been prescribed steroids for various reasons before, I don't think the amount inthe eye drops would have caused the problems I've had.
As it happens, the effect of the steroids in damaging my "motion sense processing" bran functions, and being woken up abruptly by being rolled along the corridor horizontal on a trolley with those functions so newly dmaged, meant I was so seasick I was throwing up all over the place anyway, despite the emetics! - or at least, heaving violently, despite there beign nothing there to come up.
And even more ironical that the effect of this dose of alleged anti-emetics is that I now get dizzy and seasick, on buses, trains, spooky horses, juddry excalators, etc etc etc that I get seasick and queasy at the drop of a hat!
Before anyone asks, no, I have no idea why one should expect to get an anti-emetic effect from an intravenous dose of steroids equivalent to 40 puffs of a brown asthma inhaler. (Well, more like 50-60 puffs, given the inefficiencies of getting the inhaler dose into the system not spray-painting your tongue.)
I knew in advance about the steroids eye drops, and didn't think, from previous steroid use, they'dhave been enough to be a problem, though I don't like being on steroids if I can help it. No-one thought to mention to me the prospect of having 40 inhaler puffs worth all in one go inthe pback of my hand. If anyone had, I think I'd have wondered about that..... I mean, 40 puffs of a brown inhaler in one afternoon, even before the op, and I reckon I'd have not been too well.
But then, once That Certain Surgeon had waded in at 11th hour 59th minute plus, and overruled everyone when I was too dehydrated tobe able to think straight, and literally couldhardly talk at all, my mouth andthroat were so dry, he never gave anyone a chance to talk through what happened in a GA (Matthew and I had gone through the process of the op under local, with that as the intention.
Yes another thing I can't believe I was stupid enough not to say "Hey, hold on" about.
Barbara: can we take this off-line? This is meant to be a mutual support group for people with KC. I do disagree with you, because I know my health better than it seems I've explained it. But this is not the time and place.
For the record, please don't try and "encourage" me by trying to make out anything positive has come out of this mess. It does nothing to encourage me, the reverse if anything. Ta.
Rosemary
The odd thing iwas it was just that one set of railings, not the whole field of view, and I couldn't see anything to give a heat haze there in particular. Very odd!
To H: the steroid dose in question was given along withthe anaesthetic drugs, down a canula in the back of my right hand.
There were also steroid drops put IN my eye as an anti-inflammatory. THe quantity stuck in my eye during the op is not stated.
The ones in the back of my hand, i/v, weren't intended as an anti-inflammatory - they were given, as I gather is usual at least at that hospital, as an anti-emetic. That is, to concel out the tendency of general anaesthetics to make one want to throw up.
Apparently, the nerves that drive the "heave" reflex run along next to eye nerves, so eye ops can be particularly bad for making patients throw up after a general anasesthetic. And they particularly don't want patients who've just had a corneal transplant heaving up vioently, as the force behind the heave, as it were, can put undesirable levels of pressure on the nice new neat stitching and damage the effects of the op.
SO the anaesthetists give their patients the doses of i'v steroids as anti=emetics. Matthew explained this to me when I had that meeting with him and his colleagues.
If I'd had the op under local, there wouldn't have been any emetic effect of a general anaesthetic, so they wouldn't have needed to give me intravenous anti-emetics to counteract it.
Having been prescribed steroids for various reasons before, I don't think the amount inthe eye drops would have caused the problems I've had.
As it happens, the effect of the steroids in damaging my "motion sense processing" bran functions, and being woken up abruptly by being rolled along the corridor horizontal on a trolley with those functions so newly dmaged, meant I was so seasick I was throwing up all over the place anyway, despite the emetics! - or at least, heaving violently, despite there beign nothing there to come up.
And even more ironical that the effect of this dose of alleged anti-emetics is that I now get dizzy and seasick, on buses, trains, spooky horses, juddry excalators, etc etc etc that I get seasick and queasy at the drop of a hat!
Before anyone asks, no, I have no idea why one should expect to get an anti-emetic effect from an intravenous dose of steroids equivalent to 40 puffs of a brown asthma inhaler. (Well, more like 50-60 puffs, given the inefficiencies of getting the inhaler dose into the system not spray-painting your tongue.)
I knew in advance about the steroids eye drops, and didn't think, from previous steroid use, they'dhave been enough to be a problem, though I don't like being on steroids if I can help it. No-one thought to mention to me the prospect of having 40 inhaler puffs worth all in one go inthe pback of my hand. If anyone had, I think I'd have wondered about that..... I mean, 40 puffs of a brown inhaler in one afternoon, even before the op, and I reckon I'd have not been too well.
But then, once That Certain Surgeon had waded in at 11th hour 59th minute plus, and overruled everyone when I was too dehydrated tobe able to think straight, and literally couldhardly talk at all, my mouth andthroat were so dry, he never gave anyone a chance to talk through what happened in a GA (Matthew and I had gone through the process of the op under local, with that as the intention.
Yes another thing I can't believe I was stupid enough not to say "Hey, hold on" about.
Barbara: can we take this off-line? This is meant to be a mutual support group for people with KC. I do disagree with you, because I know my health better than it seems I've explained it. But this is not the time and place.
For the record, please don't try and "encourage" me by trying to make out anything positive has come out of this mess. It does nothing to encourage me, the reverse if anything. Ta.
Rosemary
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GarethB
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Re: Update of disaster graft saga
I know what you mean Rosemary, I had to have a clear grid patern to really see the effect with the one exception of florrs with cork tiles which seem to exagerate the effect.
Gareth
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rosemary johnson
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Re: Update of disaster graft saga
Ah! - to Gareth. Then maybe it was just the angle and the spacing.
When I say white railing, I think they are actually another set like those used as "wings" of the hurdles and steeplechase fences on the course - white plastic tubes set vertically with narrow gaps between them. SO maybe that set, at that angle, and that distance away, were just the right spacing to make the effect obvious when other sets (at each hurdle/fence on the course) were at fieerent distances/angles so the spacing apeared different, and not jsut spot on to give the shimmering effect.
Presumably, they are set up there to discourage horses arriving at the two and a half mile start, and maybe quite keen going downhill, from continuing straight through the hedge and up the embankment onto the railway platform! The sets of those white railings alongside each fence/hurdle are to discourage a horse who's feeling a bit lazy from ducking out and running round the obstacles rather than going over it!
Rosemary
When I say white railing, I think they are actually another set like those used as "wings" of the hurdles and steeplechase fences on the course - white plastic tubes set vertically with narrow gaps between them. SO maybe that set, at that angle, and that distance away, were just the right spacing to make the effect obvious when other sets (at each hurdle/fence on the course) were at fieerent distances/angles so the spacing apeared different, and not jsut spot on to give the shimmering effect.
Presumably, they are set up there to discourage horses arriving at the two and a half mile start, and maybe quite keen going downhill, from continuing straight through the hedge and up the embankment onto the railway platform! The sets of those white railings alongside each fence/hurdle are to discourage a horse who's feeling a bit lazy from ducking out and running round the obstacles rather than going over it!
Rosemary
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Hilary Johnson
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Re: Update of disaster graft saga
Thanks for the clarification. I understand now.
I'm glad there's been good news about the IOP, and that you've got things resolved with the GP's manager. I hope she gets those referrals sorted, you've been waiting long enough.
I'm sorry to hear re Dukes feet, and further "bad trips".
You said:
"Does no-one at that place understand that when an op's gone totally pear-shaped, the last thing you wnat to know is what a neat piece of surgery you've got?!"
I guess the answer is - No, they don't! I guess one of the qualities that makes someone a good surgeon is the ability to focus 100% on their work and ignore all sidetracks - but that really doesn't excuse being insensitive in that way. Also, people have a habit of doing the opposite of what they're told to.... like "Don't ask" seems to just encourage people to ask. I'm afraid I think this just comes into the category of things one has to grit ones teeth and try ones best to ignore. Unless you can compress into one sentence an explanation of why it bugs you so much, and rehearse that to say next time it happens ... hmmm ... maybe not a realistic suggestion.
I know I've said something like this before but I still think you're being a too hard on yourself about consenting to the operation I mean, if you really weren't in a fit state to give consent, you really weren't in a fit state to NOT give consent. I don't think you are as stupid as you seem to be accusing yourself of. Do you really think it was 100% stupid? Or maybe you're only 80% stupid...!
I mean, yeah, sure, it would, with the benefit of all possible hindsight have been far better to stay something like:
"Hang on. I'm not happy about this. I believe there are risks for me to have a general anaesthetic. I would have discussed this x days ago if you had been available. I'm certainly not going to sign this with so little chance to talk it through. I don't like to mess anyone around, and I'm sorry for the inconvenience, but I will not consent, and if you're not willing to discuss it further, I shall have no option but to call the whole thing off."
You may not be able to answer this, but do you know why you didn't say something like that?
The reason I ask is not just to be nosey, but in case it might help you feel not so bad about it if you could understand better why you made the mistake.
I'm not sure how to explain what I mean , but I'll try...
Was it that you knew what you should say but you physically couldn't?
Or You knew what you wanted to say but you couldn't find the right words?
Or you thought it would be too silly and didn't quite trust your own judgement?
You were worried about messing everyone/Mother around?
Or having the operation seemed like a good idea?
Or you just weren't thinking straight at all?
Or .....??
Or maybe you're very clear on this really but haven't ever said so, and I should mind my own business...
Anyway, fingers crossed you get those referral appointments soon
H
I'm glad there's been good news about the IOP, and that you've got things resolved with the GP's manager. I hope she gets those referrals sorted, you've been waiting long enough.
I'm sorry to hear re Dukes feet, and further "bad trips".
You said:
"Does no-one at that place understand that when an op's gone totally pear-shaped, the last thing you wnat to know is what a neat piece of surgery you've got?!"
I guess the answer is - No, they don't! I guess one of the qualities that makes someone a good surgeon is the ability to focus 100% on their work and ignore all sidetracks - but that really doesn't excuse being insensitive in that way. Also, people have a habit of doing the opposite of what they're told to.... like "Don't ask" seems to just encourage people to ask. I'm afraid I think this just comes into the category of things one has to grit ones teeth and try ones best to ignore. Unless you can compress into one sentence an explanation of why it bugs you so much, and rehearse that to say next time it happens ... hmmm ... maybe not a realistic suggestion.
I know I've said something like this before but I still think you're being a too hard on yourself about consenting to the operation I mean, if you really weren't in a fit state to give consent, you really weren't in a fit state to NOT give consent. I don't think you are as stupid as you seem to be accusing yourself of. Do you really think it was 100% stupid? Or maybe you're only 80% stupid...!
I mean, yeah, sure, it would, with the benefit of all possible hindsight have been far better to stay something like:
"Hang on. I'm not happy about this. I believe there are risks for me to have a general anaesthetic. I would have discussed this x days ago if you had been available. I'm certainly not going to sign this with so little chance to talk it through. I don't like to mess anyone around, and I'm sorry for the inconvenience, but I will not consent, and if you're not willing to discuss it further, I shall have no option but to call the whole thing off."
You may not be able to answer this, but do you know why you didn't say something like that?
The reason I ask is not just to be nosey, but in case it might help you feel not so bad about it if you could understand better why you made the mistake.
I'm not sure how to explain what I mean , but I'll try...
Was it that you knew what you should say but you physically couldn't?
Or You knew what you wanted to say but you couldn't find the right words?
Or you thought it would be too silly and didn't quite trust your own judgement?
You were worried about messing everyone/Mother around?
Or having the operation seemed like a good idea?
Or you just weren't thinking straight at all?
Or .....??
Or maybe you're very clear on this really but haven't ever said so, and I should mind my own business...
Anyway, fingers crossed you get those referral appointments soon
H
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rosemary johnson
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Re: Update of disaster graft saga
Hi H.
Glad that clarifies.
TO attempt to answer your question:
Most of all, I think I just wasn't capable of thinking clearly.
Partly, I didn't have any definite grounds for thinking a GA was definitely dangerous (inthe way, having had one go disastrously wrong now, any other time I will have enough past evidence to flatly refuse one ever in future). I'd arrived bearing in mind the possibility that the person (Matthew, as it turned out) I talked to on the day might come up with a good reason it would be better that I hadn't thought of. He didn't, he agreed with me, and the surgeon came up with no good reason.
Partly, I think I'd always lived with the idea of medics as being insufferable patronising gits, and was insufficiently demanding that I wasn't prepared to put up with that sort of behaviour, however "inevitable" it might be.
NOw, I'd have thoguht to myself "Do I want to be lying there banned from moving a millimetre while you chop me open?" and if the answer was "No" then I certainly wasn't prepared to have him do it while I was asleep.
Partly, there was the possibility that having the op under local meant the medics in quesiton would insist on sticking a sedative into me, which I had even more grounds for believing would have been very dangerous. In fact, he did say he wouldn't do an op under local without a sedative, and I flatly refused that. He then assumed if I thought that was too dangerous, I must be going to agree to a general. At that stage, I definitely o ught to have said "Hang on a minute!" but was too dehydrated and with too thumping a headache to think what i was doing.
I did manage to get as far as thinking the phrase "Second opinion" but was too dopey to follow it through.
ANd the staff never allowed me chance to try to think straight. I think they are used to shanghai'ing nervous people into things they might be about to back out of - in my case, a disaster!
And partly because I was too stupid to say "I'm too ill to think straight, I'm not doing anything without that drip."
The surgeon rang me up the previous afternoon, when I was out in the field with Duke. I explained I'd been trying to get hold of him for ages cos I was concerned a GA might be dangerous and having discussed it with the (other anaesthetist at the pre-op appointment, wanting this under local, but was concerned wouldn't be able to stand the bright lights, but I'd now got back in touch with her and been assured the lgihts weren't usually a problem. And he said then he thought I should have the op under genral, and he'd talk about it tomorrow, and more or less refused to discuss it then. If I'd been more onthe ball, I shouldhave said to him, with sufficient pointedness, that if we took that line then, as I'd said at hte pre-op appointment, there was a significant chance I'd be in bed iwth a migraine from the dehydration resulting from trying to fast as per instructions, and not get to the hospital at all, as I'd said at the pre=op appFtmt, because I have a tendency to dehydrate badly and get migraines for it.
SO if we talked about it in advance, and I didn't try fsting unnecessarily, that would avoid that prolem.
And the other huge big thing that went wrong is: I was originally referred to the medical part of the hospital for the first time in umpteen years, because of my complaitns about ever-increasing light sensitivity. SO (when we eventually got t eappointment date sorted!) I went round there, talked to surgeon's young woman deputy about light sensitivity and how it was the bane of my life, and then he swanned in, had about 30 second conversation withher they didn't let me inon, peered at my eyes down his slit lmap, and offered me two grafts. At which point I was so shocked I practically fell off the chair, and certainly didn't think staight enough to say "How is that going to fix the light sensitivity? - putting my contact lenses in makes it worse; I'm no longer convinced it's all down to the KC, and is it not possible making better visual acuity by surgery won't actually make the sensitivity worse inthe way putting hte lenses in does?"
- I'd have been quite justified in responding to the suggestion of grafts that way; it in fact HAS made the light sensitivity worse, and so has actually exacerbated rather than done anything to improve the actual presenting problem.
Even on op day itself, when he said he didn't think the light sensitivity was anything to do with my eyes themselves, it was more likely to be to do with either the optic nerve, or even just hypersensitivity inthe part of my brain that processes the optic nerve signals (which the neuro=ophthalmologists agree with), I was still too dumb to stop and thinka dn say "Hang on a mo! What on earth am I doing here??"
I think - well, hope - a large part of all this was being too dehydrated to be able to think straight, exacerbated by having a splitting headache (not actually a migraine, just a headache) from said dehydration, and not being able to think through that.
But the more I think back over it - which, of course, i have done many many times!!! - the more things I think I shouldhave done, or said, or spotted, or...... and the more stupid it becomes obvious I was being.
And the worse it makes it to think I could actually have been so bloody stupid, however much I couldn't think straight.
If you see what I mean.......
Oh, one piece of good news is I got phoned up this morning by the chief exec of the hospital, following up my message to him a while ago about new consultant's factually incorrect letter that was being claimed as "clinical judgement". He's taking that further. I await developments.
No more news for new GP = will ahve to chase that again tomorrow.
Rosemary
Glad that clarifies.
TO attempt to answer your question:
Most of all, I think I just wasn't capable of thinking clearly.
Partly, I didn't have any definite grounds for thinking a GA was definitely dangerous (inthe way, having had one go disastrously wrong now, any other time I will have enough past evidence to flatly refuse one ever in future). I'd arrived bearing in mind the possibility that the person (Matthew, as it turned out) I talked to on the day might come up with a good reason it would be better that I hadn't thought of. He didn't, he agreed with me, and the surgeon came up with no good reason.
Partly, I think I'd always lived with the idea of medics as being insufferable patronising gits, and was insufficiently demanding that I wasn't prepared to put up with that sort of behaviour, however "inevitable" it might be.
NOw, I'd have thoguht to myself "Do I want to be lying there banned from moving a millimetre while you chop me open?" and if the answer was "No" then I certainly wasn't prepared to have him do it while I was asleep.
Partly, there was the possibility that having the op under local meant the medics in quesiton would insist on sticking a sedative into me, which I had even more grounds for believing would have been very dangerous. In fact, he did say he wouldn't do an op under local without a sedative, and I flatly refused that. He then assumed if I thought that was too dangerous, I must be going to agree to a general. At that stage, I definitely o ught to have said "Hang on a minute!" but was too dehydrated and with too thumping a headache to think what i was doing.
I did manage to get as far as thinking the phrase "Second opinion" but was too dopey to follow it through.
ANd the staff never allowed me chance to try to think straight. I think they are used to shanghai'ing nervous people into things they might be about to back out of - in my case, a disaster!
And partly because I was too stupid to say "I'm too ill to think straight, I'm not doing anything without that drip."
The surgeon rang me up the previous afternoon, when I was out in the field with Duke. I explained I'd been trying to get hold of him for ages cos I was concerned a GA might be dangerous and having discussed it with the (other anaesthetist at the pre-op appointment, wanting this under local, but was concerned wouldn't be able to stand the bright lights, but I'd now got back in touch with her and been assured the lgihts weren't usually a problem. And he said then he thought I should have the op under genral, and he'd talk about it tomorrow, and more or less refused to discuss it then. If I'd been more onthe ball, I shouldhave said to him, with sufficient pointedness, that if we took that line then, as I'd said at hte pre-op appointment, there was a significant chance I'd be in bed iwth a migraine from the dehydration resulting from trying to fast as per instructions, and not get to the hospital at all, as I'd said at the pre=op appFtmt, because I have a tendency to dehydrate badly and get migraines for it.
SO if we talked about it in advance, and I didn't try fsting unnecessarily, that would avoid that prolem.
And the other huge big thing that went wrong is: I was originally referred to the medical part of the hospital for the first time in umpteen years, because of my complaitns about ever-increasing light sensitivity. SO (when we eventually got t eappointment date sorted!) I went round there, talked to surgeon's young woman deputy about light sensitivity and how it was the bane of my life, and then he swanned in, had about 30 second conversation withher they didn't let me inon, peered at my eyes down his slit lmap, and offered me two grafts. At which point I was so shocked I practically fell off the chair, and certainly didn't think staight enough to say "How is that going to fix the light sensitivity? - putting my contact lenses in makes it worse; I'm no longer convinced it's all down to the KC, and is it not possible making better visual acuity by surgery won't actually make the sensitivity worse inthe way putting hte lenses in does?"
- I'd have been quite justified in responding to the suggestion of grafts that way; it in fact HAS made the light sensitivity worse, and so has actually exacerbated rather than done anything to improve the actual presenting problem.
Even on op day itself, when he said he didn't think the light sensitivity was anything to do with my eyes themselves, it was more likely to be to do with either the optic nerve, or even just hypersensitivity inthe part of my brain that processes the optic nerve signals (which the neuro=ophthalmologists agree with), I was still too dumb to stop and thinka dn say "Hang on a mo! What on earth am I doing here??"
I think - well, hope - a large part of all this was being too dehydrated to be able to think straight, exacerbated by having a splitting headache (not actually a migraine, just a headache) from said dehydration, and not being able to think through that.
But the more I think back over it - which, of course, i have done many many times!!! - the more things I think I shouldhave done, or said, or spotted, or...... and the more stupid it becomes obvious I was being.
And the worse it makes it to think I could actually have been so bloody stupid, however much I couldn't think straight.
If you see what I mean.......
Oh, one piece of good news is I got phoned up this morning by the chief exec of the hospital, following up my message to him a while ago about new consultant's factually incorrect letter that was being claimed as "clinical judgement". He's taking that further. I await developments.
No more news for new GP = will ahve to chase that again tomorrow.
Rosemary
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Hilary Johnson
- Contributor
- Posts: 48
- Joined: Fri 07 Mar 2008 9:57 am
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Yorkshire
Re: Update of disaster graft saga
Hi
Glad you're getting some progress with the complaint.
I dunno about you, but I find if I can look back on something and think of all the ways I could have handled it better, I feel not so bad as I do if I look back and can't understand what I did wrong - because thinking "I was stupid in the past but I know better now," is a lot more comfortable than thinking "I am stupid".
Of course thinking differently about it doesn't ever change any of what happened, but I guess it's the difference between being a "victim" and being a "survivor" - presumably you've heard of that concept? I certainly have now because I'm doing some statistics work assessing the effectiveness of projects that help victim/survivors of domestic violence. Yet another career change...! Time I got on with it...
H
Glad you're getting some progress with the complaint.
I dunno about you, but I find if I can look back on something and think of all the ways I could have handled it better, I feel not so bad as I do if I look back and can't understand what I did wrong - because thinking "I was stupid in the past but I know better now," is a lot more comfortable than thinking "I am stupid".
Of course thinking differently about it doesn't ever change any of what happened, but I guess it's the difference between being a "victim" and being a "survivor" - presumably you've heard of that concept? I certainly have now because I'm doing some statistics work assessing the effectiveness of projects that help victim/survivors of domestic violence. Yet another career change...! Time I got on with it...
H
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